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

Robyn Dunphy2 Comments
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
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.

Robyn DunphyLeave a comment
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!

Robyn Dunphy3 Comments
Watch

I LOVE a Mystery!

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

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

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

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

Body Battery

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

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

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

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

Calculation

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

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

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

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

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

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

Body Battery This Morning

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

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

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

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

Stress Graph

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Movement As Medicine

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

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

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

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

Information re medication

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

The current list of sore bits?

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

I think I’ve listed everything.

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

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

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

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

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

Walk

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

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

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

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

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

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

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

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

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

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

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

Taregts

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

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

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

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

Movement As Medicine

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

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

Robyn Dunphy4 Comments

Choosing Your Doctor/(s)

At the risk of the medical profession banning me for life, yes, I’m going to look at this topic. Let me say at the start I have a great medical team: my GP, my specialists, my surgeons and my allied health practitioners are all fantastic. If they weren’t, they wouldn’t be in my team. It is that simple. Of course, they aren’t “mine” as in, I don’t own exclusive rights to them. Even so, to me, they are “mine”. I do share them with other nice patients!

My condition, psoriatic arthritis, is not terminal: so while my life does not depend on my doctors, my quality of life certainly does. In my experience, it is important to feel you “click” with your doctor/(s). I think that is important to anyone managing a chronic condition. We aren’t popping in once a year to have our blood pressure and heart rate checked or for an annual blood test. We need to be able to communicate on an ongoing and regular basis, years in fact, with someone we trust and whom we feel trusts us. Our relationship with our long-term doctors is, in my view, critical to ensuring we achieve patient goals. There would be no point in my seeing doctors who were not as into Movement As Medicine as I am, for example. Continuity of care is also important. I don’t have to relate my history every time I go for an appointment, my practitioners know my history.

Now, doctors are just the same as the rest of us. They may relocate, they may take maternity leave, they may make a career change. I’ve had my GPs take maternity leave, I had an endocrinologist move into management, a psychologist give up private practice. Or we move – I changed endocrinologist, gastroenterologist and GP when I moved from one side of town to the other. Doctors retire – my rheumatologist is currently in the process and I have proactively moved to one of his colleagues to ensure a smooth transition of care. Even if you are happy with your current doctor/(s), there will no doubt be a time you have to change.

Patients need to think about what is important to them, aside from clinical expertise. If you feel you gel or click with your doctor, you are more likely to follow their advice and instructions.

What do I look for (other than clinical/surgical expertise)?

Top of the list is a sense of humour. One of the ways I deal with my disease is humour and I need my doctors to be on board with that. This would not work for everyone, I acknowledge that.

The doctors need to have moved on from their registrar days in hospitals and not expect their sick patients to look sick! That’s me on my invisible illness crusade again. It doesn’t matter how much pain I am in, if I can get that lippy on, I will have it on. Don’t look for a lack of lippy as an indication of my state of health.

Me after my total knee replacement surgery. My nails were painted by Day 2!

Don’t speak to me like I am a child. The doctor is trained in their field, I’m trained in mine, don’t think I’m less intelligent that you are! If the doctor can’t adequately answer my questions, that says more about the doctor than about me. I don’t care how “medically dumb” my question is, I expect a proper explanation because I’m not medically trained – if I was, I may not have asked the question. Gold star to my knee surgeon, by the way. He excelled!

Which brings me to arguing debating. Yes, I will debate issues with my doctors. Once we’ve agreed a strategy, I’m a very compliant patient, because I then have equal ownership of the decisions made. Let’s face it, I’m the foot soldier here. The doctors are the commanders back at headquarters, they aren’t in my home every day ensuring I take my medications, (try to) sleep right, eat right and exercise. They aren’t the ones doing the hard yards managing my health on a day-to-day basis, I am. Flip side note here: I was once a member of a support group and another patient said her rheumatologist was going to be cross with her. Why, she was asked. Because she hadn’t filled the prescription the rheumatologist had given her three months ago. I don’t know how doctors deal with situations like that, I don’t think I’d be good at it! SO I take my hat off to those doctors that manage those situations smoothly.

The ability to admit they don’t know something. I don’t expect any medical professional to know everything (there is SO MUCH to know), but I do expect them to be open enough to say, “I don’t know, I’ll find out” or “I don’t know, ask your [other] specialist”. This is also about being curious. Your doctor needs to be the curious type. Those of us categorised as “complex comorbid” are not text book cases. Symptoms may be caused by any one of a number of conditions. I recently did the specialist merry-go-round to find the cause of an issue. From GP to gastroenterologist to rheumatologist to endocrinologist. Also, research takes about 15 years to become embedded in practice. Curiosity can work in our (the patients’) favour.

Although this is a bit of a long shot (I was lucky), it can definitely help if the doctor or specialist has an interest in the particular condition you have. Or has it themselves, which just about ensures a specific interest. Again, doctors are people too – they aren’t all text book “healthy”. They may have an interest in a specific condition because a family member or friend has that condition or simply because it interests them. We all have specific interest in our lives: yesterday was Melbourne Cup Day – I am not the slightest bit interested, but a girlfriend will have been there in all her finest frockery. I went to the gym and lifted heavy things. Why does one person become a virologist and another a microbiologist? Something about each attracts that specific person. My hope is they will be more up-to-date with treatment developments if they have that specific interest.

I do like to see they look after their own health. They exercise, don’t smoke, wear a mask (re Covid-19) and hopefully get enough sleep. Sleep can be difficult when hospitals ring anaesthetists at 3 am in the morning when a patient’s pain is uncontrolled, I know. I wonder how many calls each night some receive. To my way of thinking, if a doctor doesn’t follow the advice they give to patients, why should the patient follow that advice? Of course, as noted above, some doctors have chronic conditions themselves so they may not look like the embodiment of Superman or Superwoman and that’s fine.

Have I ever had a problem with a doctor? Yes, I have. I once ended up with two Merina IUDs in my body and was not at all well as a result. The story is a bit long for this article, but the experience taught me that patients have every right to question and to go to another practitioner if deemed appropriate. Which is exactly what I did in that case.

There are times when we have no choice. A friend had surgery that was only available from one surgeon in Australia at the time. Whether he liked the surgeon or not was not a consideration – if he wanted the surgery, that’s who my friend had to go to.

Yes, cost is a factor as well. Clearly I am not talking about attending out-patient clinics in public hospitals where there is no choice of practitioner and it is possible the patient sees a different doctor each time they attend an appointment. I am an avid supporter of public health, but there are ways we could try to improve it especially in relation to chronic illness patients. Seeing doctors in private practice means you need to ensure you really understand how the safety net threshold works and that you are registered correctly as a family or couple if applicable.

One’s relationship with one’s doctors in not quite the same as with other service providers. A plumber comes in, fixes the drain and leaves. Job done. One’s relationship with one’s health care providers is more personal than that. The impact on my life could be considerable, so I need to feel I have the right doctors for me.

One problem is this. I’d love to take my GP out for dinner, but my understanding is that is ethically inappropriate, sadly. I also have an awful feeling we’d get into trouble – and I suspect if she reads this I am in trouble. I have sent a previous GP flowers because she had gone above and beyond on a particular occasion and I wanted to show my appreciation. Flowers are OK.

Robyn DunphyLeave a comment
leg press

I Am Angry

I’m not just angry, I’m sweary angry. However, because I am publishing I am behaving and resisting using the words I am using in my head. Those of you who know me personally can imagine, I am sure.

Recently I was interviewed by SBS News as a vulnerable person in relation to Covid-19.

Robyn Dunphy, 67, has psoriatic arthritis and is on immunosuppressive medication. She is at risk of severe disease. She still takes precautions such as avoiding shops, only buying takeaway coffees and even wearing a mask in the gym if there are other people there.

The Australians still putting their lives on hold to avoid Covid

I later learned it was said about me that “vulnerable people don’t go to the gym“. That is paraphrased. I was like WTF??? My immediate reaction was along the lines of, “Well, that is one person’s uninformed opinion, it doesn’t matter, don’t let it worry you”. Then I thought about it. No, it won’t be only one person’s opinion. There will be others thinking similar, if not the same.

I’m here to tell you why vulnerable people go to the gym. It is a question of risk and return. Of wanting to live a life worth living.

If I do not exercise, my condition will worsen. That is 100% guaranteed. By comparison my risk of catching Covid-19 is lower. Yes, I have four risk factors which mean if I catch Covid-19 I may not fare well:

I mitigate risk as much as I can:

  • I have had five Covid-19 vaccinations including the new bivalent Moderna shot.
  • I mask anywhere indoors – see gym masking below for variation to that rule.
  • I choose my times to go to the gym very carefully.
  • I am retired so I am not exposed to a work environment.

I have a choice. I already know my health deteriorates without the required exercise. I have experienced that, especially over the last two years. I need the weight training in order to retain my physical independence. My rheumatologists words? “Exercise, eat right, good sleep.” We are about to clock up three years of this pandemic – if I had not persevered with my exercise regime as much as I could during that time, I’d be in trouble. I’d be in pain I don’t want to be in.

This attitude of “vulnerable people don’t go to the gym” is very similar to the Invisible Illness issues I addressed in a recent article. People who don’t know make assumptions, make judgements. Unfair and incorrect judgements. Am I being accused of “making it up”?

I mentioned above my masking rule variation for the gym. I’m currently lifting 115 kilograms on the leg press and yes, I do find that level of exertion difficult with a mask on. At lighter weights I can lift with a mask, but as I progress (hopefully back to my personal best of 160 kilograms) it is harder. So I personally do the following.

  • Make sure I am going to the gym at an off-peak time. May only be two other people there.
  • Wear mask into and through the building,
  • Depending on the weather I may do my warmup by walking around the outside of the building rather than on the treadmill.
  • I take my mask off for my 30 minutes of weight training, pop it straight back on when finished lifting.

Swimming is similar. I will take my mask off immediately before putting on my cap and goggles, mask is straight back on when I step out of the pool. I wear the mask in both the hydrotherapy pool and the spa.

Even if I am exposed to the virus during that 30 minutes in the gym, I will have minimised the viral load.

Yes, I am clinically a vulnerable person.

Yes, I will continue to go to the gym to maximise my health by adequately managing my psoriatic arthritis condition. That is a risk I calculate is worth taking given the potential cost to my health of not doing so is high.

Do not make uninformed judgements about what is right for vulnerable people. Do not call our integrity into question by voicing those uninformed judgements.

If you have questions, ask those questions.

Would I prefer we still had protections in place to mitigate the spread of Covid-19? Mitigations like mandatory isolation of infected persons, clean air regulations and masking indoors. Of course!

Robyn Dunphy2 Comments

We All Get Those Weeks

Perfectly healthy people get “those weeks”. Chronically ill people get them too, even us retired ones. My purpose in sharing my week is to assure other chronically ill people, you are NOT alone. Things just go nuts sometimes.

For a few weeks I had been experiencing a recurring tightness in my chest, off and on. Then I was getting spasmodic nausea episodes again. Occasionally I was feeling lightheadedness. My gut feeling was along the lines of my actual gut playing up, BUT to be on the safe side, I called Nurse On Call. Because of my medical status and my symptoms, the nurse called an ambulance, so I ended up in the Emergency Department (ED). This was Thursday, October 20.

Why did I call Nurse On Call? Well, last time I tried to walk off left upper quadrant abdominal pain and ended up taking myself to ED, my GP was not overly impressed with my self-care solution, so I thought this time I’d be more sensible.

AS COVID-19 OVERWHELMS HEALTH SYSTEMS, WHAT OF NON-COVID PATIENTS?

Even so, I felt like an absolute fraud – I was convinced someone else needed that ambulance more than I did. In ED they did the appropriate blood tests, which all were, thankfully, negative. They organised a NM Myocardial Perfusion stress test for the morning to categorically rule out my heart as the cause of my symptoms. I was allowed to go home.

Specific grabs from the paperwork

Prior to my trip to Nuclear Medicine the next morning, I prepared my breakfast (I had checked I didn’t need to fast) and made my coffee. I then re-read the paperwork (luckily). For 24 hours before the test, NO caffeine. The cup of coffee went down the sink. Water it was.

The stress test went without a hitch and despite my known nocturnal AV block, my heart is functioning very well.

The general consensus was at this point back to my gut (after we had discounted gall stones on the basis I have no gall bladder). So I have doubled my Somac (Pantoprazole) as per previous gastroenterological advice.

Missed my weight training on the Thursday. Not happy. Given I now had the heart all clear, I was back lifting weights on Saturday. However, I was modifying my workout because that morning I had woken up with VERY painful hands and fingers. Took 15 mg of Prednisolone per my rheumatologist’s instructions for situations like that. If it wasn’t one thing, it was another. The inflammation in my hands was not going to impact my lower body!

I took Sunday as an active rest day.

Yesterday (Monday) I lost my grip on the coffee jar. It hit the coffee mug. The coffee mug hit the floor.

My coffee mug!

Later in the day I went to cut some cheese. Cheese is soft, right? My right wrist was so painful I could not cut the cheese. The wrist wasn’t sore just hanging around doing nothing, but I could not cut cheese. So 15 mg Prednisolone again this morning (yes, could have taken it last night, but it interferes with sleep, so this morning it was). THIS time I will take it for three days.

Also yesterday I had to venture into dangerous territory – public transport. You see, as well as the above, I had noticed my gums were receding slightly. I needed a trip to the dentist and public transport is the only real option as parking is a nightmare in the city.

I’m masked for public transport!

Virtually no-one was masked. Going in wasn’t so bad as there were not many other passengers: coming home was a crowded carriage and I counted only two other people wearing masks and one of those two was clearly a health care worker. Now mandatory isolation has been done away with, I can only imagine how many Covid-19 infectious people might have been on that train. Hence the full force mask! That is not a typo, by the way – I do mean full force!

To digress slightly, I have been working with a team on a petition to reinstate mandatory Covid-19 isolation. My suddenly having these personal health glitches was not helping as I was not contributing as I wanted to. As you are reading this, please visit, read, sign and share the petition! We have over 12,300 signatures so far!

Reinstate Mandatory Covid-19 Isolation
Click here to sign

All the while my guts were not exactly behaving, but I’m not going into details, that is more than enough information! As I am typing this, I have needed another nausea wafer, but at least there is improvement from last week!

Today it was back to the GP to confirm I am doing all the right things. Then it was off to the gym, again being careful of my hands and adapting my workout. When I came out of the gym, I looked as red as my lipstick, but sadly the darn camera did not capture the redness! I was annoyed at my camera!

After my workout

Despite all of this, I have still kept up my step count, except for the Thursday. I’ve still found flowers, including the great foxglove which reminded me of my childhood.

My walking flowers

So that is my week so far. Some of us will get much worse weeks. After all, I’m just juggling sore hands and a grumpy gut. Even when “mildish”, these weeks can be disruptive. I’ve had difficulty concentrating. I haven’t got the things done I wanted to do this week. I’ve been very grateful I am retired as the fact I’ve been below par hasn’t impacted work colleagues or work deadlines. I still managed to paint my nails (of course).

To friends and family members of chronically ill people, please be aware that even though we may essentially have our conditions under control, well managed: we will still have “those weeks”. Make your patient a cup of coffee, take them out to lunch if they are up for it. Be gentle.

Reminder: this also links into the topic discussed in “We Don’t All Look Sick! Invisible Illness“. Please read that too if you have a moment.

Robyn Dunphy3 Comments

“How Can I Afford to Exercise?”

This question has been passed to me from a health care worker and is a very valid question. Many people with chronic conditions are on a limited budget. They may be working reduced hours, be on the Disability Support Pension (or worse, have been forced onto JobSeeker) or Age Pension. Disclosure: I am an age pensioner, so I have lived experience of the budgetary constraints! Like me, many will not have qualified for the NDIS. I’ve written before about the The Costs of Chronic Illness, many of which no-one, least of all governments, seem to think about! If we can’t afford to take care of ourselves, the costs of our healthcare rise.

There is definitely an argument for governments, via the health system, to make exercise more affordable for the chronically ill, but what can we do now?

Please note there are many links in this article to past articles. That keeps this article shorter than it might otherwise be. Click through to read the details!

Doctors, I find, are often (not always) good at telling patients to get exercise, but that is where the advice stops! How is left up to the patient!

Most of us can’t afford a private physiotherapist or exercise physiologist on a weekly basis. I have both myself, but unless I need specific support for a specific problem, I don’t see them as it bites the budget. I wish I could see my exercise physiologist on a weekly basis! This was one of the reasons I initially undertook my Fitness Coach education – to help people like me.

So WHAT can we do to keep costs controlled? Then I will look at WHEN we should do the exercise!

Find a gym that offers concessions: I am a member of my local council aquatic centre. This has a fully equipped gym, great hydrotherapy pool, 25 metre indoor pool, 50 metre outdoor pool, spas and a sauna. Everything I need in one place. Due to my PCC (Pensioner Concession Card) I receive a 40% discount on the membership fee. I pay fortnightly so I can suspend my membership for four weeks a year for free (e.g. hospitalisation, surgery, etc). No lock in contract either – watch out for those! Places like this are harder to find in regional areas, unfortunately.

Memberships are generally much cheaper than paying casual rates per visit. Finding a facility that offers all the services you need, as mine does, is a bonus. If you are working reduced hours, you may qualify for a concession card even if you are not technically unemployed or on a pension. Check your eligibility. The Seniors Card also attracts membership discounts.

Aside from weights, a gym gives you access to indoor rowing machines, stationary bikes and treadmills. All very useful equipment.

Have equipment at home: therabands or resistance bands come in various strengths and are available from physiotherapists and stronger ones are available at sporting goods stores. I also have a swiss ball and my daughter lent me an aerobic step when I had my knee surgery. Many of us have space considerations therefore having equipment at home has limitations. It isn’t just space: I own 2 kg and 5 kg dumbbells but realistically that doesn’t allow me to Pace UP my strength training. I need the gym for that as I have no space to house a full dumbbell set, nor can I afford one! Suggest to family members a good Christmas Present would be [whatever it is you need].

Home Equipment
Christmas Present from family – was very useful during TKR rehab!

Floor exercises at home: many exercises can be done at home without weights, sufficient for our therapeutic needs. Squats, glute bridges, planks, push ups (against the wall is fine) as a few examples. However, getting down onto the floor and back up again is not possible for all of us. I did glute bridges on my dining room table when preparing for my total knee replacement. After my knee surgery I found a way to slide off a lounge chair onto the floor using my arms, then used my arms to lift myself back up after I’d done my rehab exercises. I strongly recommend paying for at least one formal training session to ensure you have correct technique – you do NOT want to damage anything through incorrect technique. See your GP about a Health Care Plan to have five physiotherapist or exercise physiologist visits covered by Medicare – bulk billing is rare though, so make sure you are on top of your Medicare Safety Net details.

Walking: never underestimate the benefits of walking as exercise. Best of all, walking is FREE! Well, free after you’ve allowed for the cost of decent walking shoes – important with most medical conditions! It helps if you can find a local park or walking track that makes walking a pleasant experience. The featured photo above is of Gardiners Creek, a lovely spot! Some parks are implementing exercise/fitness equipment in a corner of the park, so keep an eye out for such in your locality. However, please take note of my “when” cautions at the end of this article before rushing off to walk your way to a healthier you.

Central Park
Fitness Equipment – free in the park

These public fitness equipment spots generally do not allow for a balanced workout. For example, there is a leg press in that photo but no leg curl for the hamstrings.

Get a step counter of some sort. I recently upgraded from a Vivofit generation 1 to a Garmin Forerunner 55 (bought on special). It also counts my swimming laps. You need to be able to monitor your progress properly. Christmas stocking request! Nothing more motivating than seeing your progress graphically AND wanting to maintain/improve it. Below is a comparison of the last eight weeks. Bear in mind I moved home and retired in August. I was pretty exhausted to be honest, plus there was a health “glitch”. Therefore August/September situation was messy on the steps front. Even with that excuse, I like the graph on the right MUCH better! It is good to actually see your progress.

Compare the months

Garmin Connect on your phone lets you see everything at a glance. The app is free (just as well, because the watches aren’t!). If you already have an Apple watch, check out what you may already have available.

Before any reader goes “Uh ha! We caught you! That’s more that 10%.” Yes, it is more than 10% comparing those two 4 week periods, but not overall! Plus I was still going to the gym and swimming, just the steps and walking took a tumble. I also changed my goal structure after I retired, but that is a whole other discussion for another day!

I will walk to the supermarket or pharmacy and record that as a walk. Just over 1 km. Same back. Walk to my favourite coffee shop. 1.30 km trip. Not possible for all, I know, but think about what activities you can turn into an exercise event in a similar way.

Swimming: see gym membership above. If you live near a beach, even better! Swim for free!

Hydrotherapy: wonderful if you can have access to a hydrotherapy pool with a gym membership as I do. Definitely not enough of these around, especially in regional areas. I also do squats and lunges in the pool. I have specific equipment to help me achieve my goals. Bought before I retired, but perhaps another Christmas stocking option!

Hydrotherapy equipment drying after use

Cycling/Running: both great options if you are able to. Good running shoes are expensive. Buying (and maintaining) a bike and related equipment is even more expensive. Gym membership gives you access to stationary bikes. Stationary bikes can be better when starting out as you don’t accidentally overdo it – you can stop when you feel that change in your body (see Pacing for Beginners) rather than find yourself too far from home and suffering later from over exertion. There is NOTHING to be gained from riding 35 kms today and being unable to do anything for the next three days. Consistency is key.

Motivation: I personally struggle to find motivation to do exercises at home. I’m much better going to the gym. I was fantastic at the daily rehab after knee surgery, but that had measurements and specific goals involved. We are all different, some find being diligent at home easy. I don’t. Unless I’m trying to fix something, like rehab a temporarily grumpy shoulder. Joining walking groups is a great idea, but in practice not suitable for all chronically ill people. For example, a group may walk at a much faster pace than we can safely manage with our condition/(s), walk further or walk at times that don’t suit our condition/(s) (e.g. morning stiffness/pain). I’d love to join the local swimming group, but I need to be able to swim 2 kms without stopping – I’m not there yet. Fitness classes can be demoralising if we can’t keep up. I recommend strength training is more beneficial anyway! We need to select exercise modes that suit us in order to maintain our motivation, especially if we are paying for a membership.

Covid-19 Considerations: no matter where we go at the moment, remember to be Covid safe. We already have underlying conditions, we don’t need Covid-19 on top. But then neither do we want to let our underlying conditions run riot because we are protecting ourselves from Covid-19. I wear a mask into the gym. Depending how many people are there I may well keep it on while training. I may warm-up outside rather than on the treadmill. I’ll wear my mask in the hydrotherapy pool and the spa. For lap swimming I take the mask off just before I put my cap and goggles on.

Medical Clearance: Let me repeat something I often say on this web site: ensure you have your doctor’s approval to undertake exercise and ask if there are any limitations. In most cases, musculoskeletal conditions will have no restrictions other than “listen to your body”. Other medical conditions may have certain cautions. Get a clearance. I do notice men can be more gung ho about it, so please see your GP!

I emphasise it does take time to learn to listen to your body.

Now to the WHEN!

I’ll use walking as an example. My daily target is 7,500 steps a day. I know that if I do very little incidental steps, I need to walk 4 kms to reach that 7,500 steps target. I do not walk 4 kms in one go. Now I am retired from the workforce I can walk whenever it suits me. When I was working I would aim for 1.33 kms before work, lunchtime and after work. Now I generally do 2 kms in one walk and then two separate walks of 1 km each. Many of us can do (say) 4 kms per day easily with respite between the walks, but 4 kms in one burst would drain that internal battery.

Some people may think this takes too much time. Not really. I walk 1 km in about 11.5 minutes. Exercise physiologists tell me each activity over 10 minutes is good. All I have to do is find 11.5 minutes four times a day. That is manageable. In 2014 I started by walking around the block four times a day. Some people have walked around their clotheslines to get started. Where any of us start is not a competition. Maximising your health over time is the objective.

Obviously splitting workouts like that is not really sensible for strength training or swimming – I’m not going to go to the gym four times a day to split up my weight training! Of course, this is where pacing up comes in. Start small, build up slowly.

As mentioned above re cycling, it is critical to follow the pacing principles at all times, even with walking. Where you start with any movement/exercise activity will depend on your current state of health and mobility. We are all different. Cost is not the only consideration here. Depending on where you are starting from, it may be wise to build up on free exercise, then only consider a membership of a gym once you are in a position to utilise that membership effectively. Alternatively, paying a regular membership may actually be motivation to use the facilities: you decide what works for you!

Robyn Dunphy3 Comments