For Family, Friends and Co-Workers

Multimorbid Co-ordination!

This article is primarily framed for family, friends and colleagues of multimorbid patients, to help build understanding of what your family member, friend or colleague may be trying to manage. It can be difficult for healthy people to understand the complications that can arise. The article may also be useful to new patients.

Some of us only have one condition or disease. A rather large number of us (see below) have multiple things to manage. I am one of those people! Usually it is not a problem, but the last few months have been interesting, to say the least.

Multimorbidity is common and becomes more common with increasing age

It is estimated that 38% of Australians (9.7 million people) had 2 or more of the selected long-term health conditions in 2022. This ranged from 11% of people aged 0–14 years to 79% of people aged 85 and over.
https://www.aihw.gov.au/reports/chronic-disease/multimorbidity-in-australia/contents/summary

Bear in mind I am writing from lived experience: the exact same things that I detail here are unlikely to happen to any other specific reader, but similar situations very likely will arise at some stage.

In my case I had been having a little bit of a problem with sleep and a nostril blocking at night for several years. I’d been to sleep specialists, done a sleep study, a CPAP machine was recommended. In August 2026 I was hospitalised with walking pneumonia (refer note at the end of the article). Gradually the nasal issues (and my sleep patterns) got worse.

In December 2026 I had my second ankle fused (I now have matching ankles). For some reason two things happened: 1) my blood pressure when crazy and 2) my nose blocking at night situation became intolerable over the following weeks. Yes, they popped me on BP meds while I was in the rehab hospital for the ankle.

Once out of hospital my GP (general practitioner) sent me off to see my cardiologist who did all the heart tests, showing my heart was fine. Titrated the BP meds. Even so, the BP kept fluctuating quite worryingly.

During this time the nose finally got the better of me. I walked into my GP’s office and said, “We HAVE to do something about this F**KING NOSE!” She referred me to an ENT specialist. At this point I still had not reached the 12 week post-op ankle check, and expected to have to wait to see the ENT specialist.

On March 24th I had my 12 week post-op and got the green tick for the ankle. Great! I’m free! That afternoon I got a call from the ENT office – they had a cancellation for March 26th, would I like it? Oh, yes please! I had ONE free day! March 26 I went to the ENT specialist who looked up my nasal passages into my sinuses and said, “I want you to go home, pack and head to the hospital. Now. I will call them and let them know you are coming.” His concern was I had a fungal infection in my sinuses and I discovered fungal infections in the sinuses are a little on the dangerous side. He was being responsibly cautious: fortunately for me I had a bacterial infection. In hospital for three days. Ultimate decision? I needed surgery. I thought my ankle was going to be the last surgery. Seemed not so.

To cut a long story short, the sinus surgery was scheduled for June 17th. During this period of time I had also seen my ophthalmologist and the decision was made I needed cataract surgery and fancy lenses. Those two surgeries (one eye each) were booked for July 27th and August 10th. All timed nicely, yes?

Then the rheumatologist threw a spanner in the works. I had my usual six monthly appointment with her on June 9th and naturally had the required blood tests a week beforehand. The blood tests showed a type of white blood cell, the neutrophils, were sitting at 1.2 and that is considered a little on the low side – especially when upcoming surgery is involved. So suddenly my June 17th surgery was delayed. A new tentative date of July 8th was set, but it would all depend on my neutrophils. I was to have blood tests every Saturday morning.

To top it off, my rheumatologist pulled me off both my arthritis medications cold turkey, in case one or both of them where causing the low neutrophil count. I was relatively fortunate as I didn’t suddenly have a jump in arthritis discomfort. Yes, my hands are a bit more problematic than usual and by late afternoon various muscles and tendons are not too happy, but I’m managing. I am back on one of the meds as of last Wednesday.

Thankfully my neutrophils did recover enough for me to undergo the sinus surgery July 8th. Great! However that then left me with the problem of the planned cataract surgeries. Because the ENT specialist would prefer I waited four weeks before any more surgery. July 8th to July 27th is not exactly four weeks. It is close to three weeks, but not quite!

So it was a stressful couple of weeks! However, I saw the ENT surgeon Thursday morning for the first post-op and he gave me the go-ahead to have the first cataract surgery done on Monday 27th July as planned. YAY! I was so excited!

Also saw my rheumatologist on Tuesday who also approved the cataract surgery timing. So I was very happy!

What I am not happy about is all this co-ordination between specialties was essentially done by me, the patient. Now, if the patient has a fully functioning brain, that’s fine, but mine was suffering from a lack of oxygen due to the sinuses. I somehow got my 8s confused at one stage and thought the sinus reschedule was for the 8th day of the 8th month. That did not help anyone’s planning! Finally I realised and got it sorted. I do think it would be a good idea if the specialists communicated directly in situations like this. I am NOT blaming my doctors, it is just how our system in Australia works. There needs to be improvement so the patient is not the primary communicator!

I have to say the brain has returned to normal because NOW I have a good oxygen supply! My O² Sat and VO² Max have both improved, my sleep has improved. My BP, while not yet back to normal, has at least stabilised. Even my Garmin watch tells me my oxygen levels are better!

My first (left) eye was done on Monday. It takes a few days for the eye to fully recover and the “new normal” vision to settle in, but as I write it is Thursday and I can definitely see light at the end of the tunnel (no pun intended).

At the moment (this is NOT permanent, just post-op), my day goes like this:

Morning:

Disinfect hands
Insert a drop of one med into the operated eye
Wait one minute
Insert a dop of the other med into the eye
Flush the sinuses with saline solution
Take morning medications, including Creon for the pancreas with breakfast
Take and record BP for cardiologist

Midday:

Lunchtime – take the BP med
Disinfect hands
Insert a drop of one med into the operated eye
Wait one minute
Insert a dop of the other med into the eye
Take Creon with lunch

Evening:

Take Thyroxine at least 30 minutes BEFORE dinner
Disinfect hands
Insert a drop of one med into the operated eye
Wait one minute
Insert a dop of the other med into the eye
Take Creon with dinner
Flush sinuses
Spray a med up both nostrils
Around 7:30 pm take BP readings for cardiologist

Before Bed:

Disinfect hands
Insert a drop of one med into the operated eye
Wait one minute
Insert a dop of the other med into the eye
Affix eye guard over operated eye before sleep

HOWEVER I am back to 7,500+ steps a day and 4 kms of formal walking. Not allowed heavy lifting yet, but might pop into the gym next week just to do a little light stuff.

I added up my surgeries. The right eye will be my 15th surgery.

Note re the walking pneumonia mentioned above. It is highly possible I did not have walking pneumonia but the issues I was experiencing at the time could have been related to my sinus issues. We can’t know for sure, but the diagnosis at the time was not conclusive. Hindsight can be a wonderful thing.

If you have a family member, friend or colleague who is a multimorbid patient, there are times when it is not fun and also not easy to co-ordinate. Please be understanding. There is also a gastroenterologist in the above mix, but that is a story for another day!

July 30, 2026July 30, 2026

Robyn DunphyLeave a comment

It Has Been A While

As I sat down to write this article, I realised the last article I published was August 27 LAST YEAR! I have been quiet for a very long time. Sometimes, in the chronic illness world, this happens. Our priority at all times MUST be project managing our situation. If nothing else, this article will demonstrate how the unexpected can happen and somehow we still have to manage it all.

What started with the August 2025 trip to hospital turned into a stretch of challenging time. When I got home from hospital I was still recovering to some degree. So that was my priority. I really had no brain waves about topics to write about either, as my focus was on getting my Movement Is Medicine back on track. On October 26 I received a call from my brother: the doctors had given him two weeks to live. I spent the rest of the day organising flights and left for Aotearoa New Zealand the next day. My sister had passed away in 2023, losing my brother as well so soon is so sad. I was notified of his passing as I was being discharged from the rehab hospital (see below). While I am very sad to have lost my brother, I am relieved he did not spend months in severe pain.

I returned from Aotearoa New Zealand in November and starting physically preparing for the scheduled second ankle fusion (that took place December 2). Readers who have had an ankle fusion or read about my first ankle fusion will know that while the final outcome is fantastic, the post-op period is a nightmare!

Two screws fusing the subtalar joint of my ankle

In summary:

2 weeks in a plaster cast, operated foot elevated 23 hours of every day (in a rehab hospital)
4 weeks in a fibreglass cast, non-weight bearing so on a knee scooter
At the 6 week mark, x-ray, review by surgeon, if all good promotion to a moonboot
4 weeks in a moonboot, with crutches for the first 3 weeks as the weight bearing is increased slightly each week
At the start of week 11 you can actually migrate to runners! Yay!
At the end of week 12 another review by the surgeon and hopefully you are set free: with some restrictions.

Of course, showering is a challenge. Non-weight bearing, so a shower chair is needed, and of course the cast has to be wrapped in a couple of rubbish bags. Tip: so you can find the start of the tape after the shower, I do a little fold over bit as shown below.

So it is a long 12 weeks. Also, this time it was my right foot, so I had an extra four weeks that I couldn’t drive than with the left foot. For Americans reading this, we drive on the other side of the road. Can’t drive in a moon boot!

I wasn’t sure why, but even then I just didn’t feel up to writing. I was to find out, at least partially why, rather quickly.

On the same day I saw the surgeon for my green tick, I had a GP appointment. My main topic for her was, and I quote, “We have to do something about this f**king nose!” I’ve had problems with the right nostril blocking at night for about two years – it is why I bought an adjustable bed base. The blocking seemed to have worsened since the surgery. I was well and truly over it. My GP referred me to an ENT specialist. Through sheer luck I snagged a cancellation slot on the Thursday instead of waiting the usual three months to get in to see a specialist.

By Thursday afternoon I was back in hospital.

A different hospital, but still a hospital. The ENT specialist had popped a camera up my nostrils and wasn’t happy with what he saw. He was concerned I may have had a fungal infection. The less dangerous possibility was a bacterial infection. On reflection, I think because he had never met me before, he stressed the risk of a fungal infection to ensure I’d go to hospital. So I went home, packed (forgot slippers of all things) and a neighbour kindly drove me to hospital. The specialist had called the hospital and spoken to the ENT department, but I still had to go through ED (Emergency Department). They couldn’t find me a pillow. A minor but annoying complication. Blood tests, nasal swabs, IV antibiotics and steroids followed. To cut the story short, turns out it was bacterial, not fungal. I will be reviewed on April 17, but at this stage the plan is…..more surgery. On my sinuses. Wonderful.

I come home from the hospital with two nasal sprays, antibiotics, steroids and a nasal/sinus wash. Great. And I really wasn’t feeling too well. Again writing articles dropped down the priority list.

An added complication has been my blood pressure (BP). Now, I’ve always been rather proud of my perfect blood pressure. There is one non-steroid anti-inflammatory medication that will raise it, but I don’t take that medication any more. However, there I was in the rehab hospital (December) and my BP was sky high. Even as I write, it is still not back to normal, but there has been considerable improvement. Yes, I am taking BP medication *throws arms in the air*. This has never happened with any of my other surgeries (both knees, other ankle, bi-lateral foot surgery plus a number of “removals” of “optional” organs).

Even my trusty Garmin smartwatch has been telling me my activity assessment is “Strained”. In all the years I’ve been wearing Garmin, I’ve never before been told I was straining to achieve my walks or anything else! Now I was. This week, I’m finally back to “Productive”. Yay!

Garmin reporting my activity was "Strained" — Garmin reporting my activity was “Strained”

It seems the stress of surgery on my immunosuppressed body may have allowed the bacterial infection to get a better grip on my nose/sinuses. My VO² Max had dropped three points which I initially put down to lack of activity, but I think the nasal issues have not helped. The BP we initially thought may have been a reaction to the anaesthetic but any reaction should be well and truly resolved by now (almost four months later). So yes, I’m getting checked out by my cardiologist in April. Last time I saw him, some years ago, the problem was low BP.

Back to the ankle fusion! I knew what I was letting myself in for this time. I organised my own knee scooter that was the right height for me. I had suitable clothes to fit over the casts from the previous surgery. I still hated the knee scooter, the immobility, the frustration. However, knowing I had an extra four weeks of no driving this time, I bought dumbbells so I could keep doing upper body exercises at home, plus I had rehab exercises for the legs from the physio. I had even taken my dumbbells into hospital with me, as the heaviest dumbbell they have is 5 kilograms.

It took a bit longer for this ankle to reach the totally pain free stage, but i think that was because the sinus infection slowed down the healing. It is fine now, I’ve even got back on the leg press machine (at a very low weight!).

Even after all that, this week I discover I need cataracts removed and I’ve chipped the front off a tooth crown so off to the dentist next week. I need a holiday from health stuff! Although I have to say I did like the morning tea cake with the little blue flower (at the top of this post)!

What kept me sane all this time? To a large extent, the lovely people I puzzle with on BlueSky who, although they didn’t know it, were helping take my mind off all of the above. They made me smile. Thank you all.

March 29, 2026

Robyn DunphyLeave a comment

Be Careful Who You Believe!

I had a very concerning conversation on social media across yesterday and today. I made a post (see below) and the reply poster (I’ll call him RP from here on) told me my exercise regime was wrong, according to his doctor. Not only that, what he told me to do was COMPLETELY incorrect for my situation. What concerns me is people new to chronic illness life may be persuaded by him to follow his advice which may be COMPLETELY contraindicated for those people. Everyone is different!

To put some context around the conversation that took place, on December 29 I had an infected cyst removed from my back by a plastic surgeon. Because it was infected I was given strict instructions NOT to get the dressing wet or to sweat. It is not a waterproof dressing, due to the fact the cyst was infected. We are in Australia, in summer: we can sweat walking to our letterbox. So I have had to take that into consideration in the last couple of weeks.

Secondly, I am clinically heat intolerant. In the past I have ended up in the Emergency Department due to my heat intolerance. I prefer to avoid that.

To top it off, we have been in the middle of a heat wave. Looking at the RP’s social media profile, I think he may not be used to temperatures around the 40^o Celsius mark. Trust me, not the sort of temperatures it is safe for me to be out and about in.

Most of my followers were aware of all the above when I made the following post, so I didn’t go into specific detail.

YAY! After the heat inhiiting my working, II finally got my daily goal again! Next 2 days will be OK, then we are back in the 30+ range again. (includes two pics from Garmin

The reply I received?

“Walking? That’s more of a stroll! Let’s start with 5 km a day!”

He had not, I think, clicked into the actual image (full image above title) to see I had in fact walked 4.1 km in total.

My reply:

've got a better suggestion.

How about you educate yourself about managing chronic illnesses, heat intolerance, biologic medications and a few other things.

I do quite often walk 6 km a day, but NEVER in one hit and CERTAINLY NOT inn 30 degree temperatures. (Included link to my About page)

At that point I thought that would be the end of the discussion. But no! This morning I woke up to a stern lecture.

RP’s reply to me:

“I don’t have to, my doctor has recommended that I go for regular walks for various health reasons. And he didn’t mean 10 minutes around the corner, but 30-60 minutes a day! So I can only recommend that you educate yourself!”

He then added, “BTW: At every weather!”

I have redacted his ID in the image below.

I am actually qualified to give exercise advice, which he would have discovered if he had bothered to actually look at my About page.

I replied:

No, RP, you are not correct in assuming what is recommended for YOU is suitable for ALL patients. If you do that, you risk causing someone damage.

l am qualified, thank you very much, to give the advice I give. You are not. So please pay attention and learn some things you clearly do not know.

I do exercise for a hour a day, just not all in one hit, which would lead to the Boom/Bust cycle, something you clearly know nothing about.

Again, I am qualified in this field. You are not. I also have 10 years lived experience. Into my 11th year now. It is not safe for you to give incorrect advice to other patients based on something your doctor told you for your medical situation. Please do not do that!

So his doctor has recommended he walk for 30 to 60 minutes a day. Great. FOR HIM! He clearly knows nothing about the Boom/Bust Cycle, Pacing, chronic pain management and a host of other things. But he sees fit to tell me, in my 11th year of managing my chronic illnesses and qualified in exercise and having attended a chronic pain management program, that his doctor’s advice applies to ME? Furthermore, he tells me to educate myself?

Importantly, not many doctors are also qualified exercise practitioners. That is why we have Exercise Physiologists, Physiotherapists, Fitness Coaches and Personal Trainers. Exercise Physiology is a four year degree: not many doctors will have added that onto their already lengthy medical degree and training.

Of course, in attacking me, he chose the wrong person. I know what I am doing. My medical specialists are in total agreement with me. I was qualified to hit back.

What worries me is people new to chronic illness life, or their family or friends, may believe this random uneducated person on the internet and do themselves some serious damage in the process. Always make sure you receive advice from QUALIFIED practitioners who ALSO know YOUR specific medical situation. RP’s doctor knows NOTHING about me, but RP thinks his advice somehow magically applies to me. I wouldn’t give RP advice unless I had done a complete assessment consultation and he had medical clearance in writing.

Reference Articles (some are already linked above):

Beat the Boom/Bust Cycle
Pacing for Beginners
Pacing THRU, Pacing UP, Pacing DOWN
Let’s Revisit Pacing
Exercising in Summer When You Are Heat Sensitive

January 17, 2025July 21, 2026

Robyn Dunphy4 Comments

We Are Not All The Same

This article is for family, friends and colleagues of chronic illness patients. Maybe even for some of the newer patients among us as well – it takes a while to learn the ropes.

Many diseases/conditions are very different from one person to another. If you have a family member with rheumatoid arthritis, for example, and you meet a new co-worker with rheumatoid arthritis, they may have very different symptoms and daily life challenges. Just because one patient can walk and weight lift does not mean another can. Another patient may be using a walker. Same disease, different outcomes.

This can be for any number of reasons, depending on the disease, but here are few possibilities:

How long have each of the patients had the disease?
How far had the disease progressed before the patient was diagnosed?
How effective are their medications for THEM?
Have they been able to persist with physical therapy, if appropriate for the disease?
Does one patient have multiple conditions and the other only one condition?
If one works and the other doesn’t, the working patient may struggle to find energy to care for themselves.

The number of times I’ve heard people say to patients something along the lines of, “My aunt has xyz disease just like you and she can do way more than you can. Have you tried abc (insert any popular supplement here) supplement?”

Although I still do a few casual hours, I retired (see article linked above) in 2022 because working, even reduced hours, just left me absolutely wrecked at the end of the day. I had no energy left to look after ME!

Many of these diseases are progressive – that is, they do more damage the longer we have the disease. Many medications can slow or even stop the progression, but not necessarily for all people. We don’t all have the same outcomes from the same medications. For most of the diseases I am considering in this article, the medications don’t undo existing damage, so if we are diagnosed later than optimal, we may be stuck with the damage already done up to that point.

If patients have more than one condition (and SO many of us do) those conditions can interact. For example, back in 2014 when I first began treatment, my rheumatologist would not treat me for his specialty until the endocrinologist got my thyroid under control.

Some patients may have more than one condition that results in fatigue, so they may be “doubly” fatigued.

I’ve written before about Invisible Illness. Just because one patient doesn’t look sick (in your view) doesn’t mean they aren’t. I don’t look sick, most of the time, but another patient with exactly the same clinical diagnosis could be using a walker. I have a friend with MS – he still works and drives. I knew another MS patient many years ago who could no longer speak and was in a wheelchair.

Many of us have researched our condition/(s) to the nth degree. We probably have a team of specialists and allied health practitioners looking after us. For example, I have:

GP (general practitioner for overseas readers)
Rheumatologist
Gastroenterologist
Ophthalmologist (every two years only)
Neurosurgeon (new)
Sleep Specialist
Cardiologist (although haven’t seen him for years, no need)
Dermatologist (also haven’t seen him for years as the meds have the skin covered as well)
2 x Orthopaedic Surgeons (they each do different bits)
Physiotherapist
Myotherapist
Exercise Physiologist

I feel like I’ve forgotten one, but you get the idea.

Yes, we may recommend practitioners to each other if another patient asks.

All I ask is that people not expect us to be the same as anyone else they know with the same condition/disease. We pretty much won’t be. Of course, given the global population and the number of people with chronic illnesses, there will be some that are very similar in presentation. Read Will Society Adapt? When? How? for some numbers. It is quite shocking, really.

Each of us will be different. Please don’t make assumptions.

November 22, 2024November 22, 2024

Robyn Dunphy1 Comment

Are Strong Pain Meds and Exercise a Good Combination?

Rule number 1 – discuss your specific situation with your doctor if in any doubt. Having said that, my experience is no, usually not a good combination.

Now, obviously I am not talking about trying to lift weights on pain meds after surgery! Just listen to your rehab physiotherapist!

What I am talking about is when patients are in situations like mine. We have a chronic illness, in my case psoriatic arthritis, and one of several things happen (or more than one happen together).

The most obvious examples are:

The condition flares
The primary treatment medication stops working for the patient
The patient is waiting for a new medication to start working.

At times like this the patient may have no option but to resort to a stronger pain medication than Panadol Osteo or similar.

Side note! If you are a friend, family member or colleague of a patient reading this, please be aware changing medications is not a simple thing with many of these diseases. A new medication can take anywhere from two weeks to six months to reach full effectiveness, with hopefully incremental improvements along the way. The medications are also NOT a cure. Not all medications work for all patients: I’m a prime example, my newest medication is medication number 11 in the 10 years I’ve been managing my disease. Medical science may develop cures in time, but we are not there yet.

My usual routine is I lift weights, walk and swim. If I am on strong pain meds, I do not lift weights. If the shoulders are involved, I do not swim either.

In order to exercise safely you need to be able to listen to your body. Perfectly healthy people lifting weights need to listen to their body: it is even more important for those of us with an illness we are managing to be able to listen to our bodies. Some time ago I wrote Changing Your Exercises for Safety where I looked at some adjustments we can make to exercise safely. I didn’t discuss pain medications as back then I really wasn’t using any of the “big stuff”. In 2023 I wrote about changing medications and what you can expect – it isn’t always easy!

If I am on strong pain meds, I can’t read my body as well as I need to be able to, to protect myself from inadvertently injuring myself or making my situation worse. I can’t necessarily tell if I should drop (reduce) the weight I’m lifting because it is possible the pain meds are blocking any discomfort I am causing myself.

Yes, not going to the gym may cause other issues. At the moment my lower back is a bit grumpy because I have been not willing to risk doing the extensive range of posterior chain exercises I usually do which keep my back in a pain-free state. But I’ve been on pain meds, off and on, for much of this year. I’ve just started my third treatment medication for this year and have been able to stop the strong meds.

I returned to the gym yesterday. I was VERY careful. Lifted very low (for me) weights to see how my body responded. No trying to do 160 kg on the leg press, I assure you. I did 45 kg. So embarrassing. I found the leg extension a real challenge, so was very careful. Despite how much walking I do, clearly my quads have taken a little holiday.

The quads are a good muscle to compare with others from yesterday. They seemed so weak that I don’t think I’d have physically been able to do myself any damage even if I was on pain meds – the strength just wasn’t there. However, the chest press was a different story: I had the strength to lift more than I did, but doing so hurt my shoulders and I could feel that, so dropped the weight back. On pain meds I probably would not have been able to feel that warning. I may have overly stressed my shoulders which are in recovery mode at the moment. I will say my shoulders feel better today than they have for months. I had steroid injections in them a few months ago – they were bad. But I need to go slow and steady to build up my strength again. And give the new medication a chance to work.

Why have I not been swimming? Same thing: reading my body. On strong pain meds I would not be able to tell if I was aggravating my shoulders or not. I will try swimming this week and see how the shoulders react, but I will be very careful.

Each disease is different. Each patient is different: patients will be on different pain meds and even if on the same pain med they may be on different doses or strengths. This isn’t a one size fits all situation.

If I know beyond doubt it is only my upper body flaring, for example, I’ll still do lower body exercises and vice versa. But it takes experience to be able to determine these things. I’ve clocked up 10 years this year and every year brings something different to learn as a patient.

Movement IS Medicine – but we need to be very careful when our disease is running riot and we are having to resort to strong pain medication.

October 19, 2024

Robyn Dunphy1 Comment

It Is Like Two Days In One

I’ve had a weird day. Even for someone who has had this disease for ten years, this is a weird day. I’m writing about it for three different audiences:

Medical professionals, because this is the stuff we never get to cover in an appointment with you
Friends, family and colleagues of chronic illness patients, to provide some insight into what your friend, family member or colleague may be going through
Other chronic illness patients – sometimes we can feel as if we are the only one having particular experiences.

The overall situation I describe here is not unique to psoriatic arthritis, but some aspects will be. As that is the disease I have, that’s what I am writing about.

Let’s get into it. This morning I woke up at 6:15 am feeling like a broken doll. I had sore fingers, sore wrists, sore upper arms and a sore neck. Thankfully, my lower body seemed perfectly fine. There was also a very blah feeling. Malaise? Not sure I was quite at the malaise stage, but I certainly didn’t feel like singing and dancing.

By about 10 am I thought to myself, “Oh, I think it is starting to lift!” Tossed up whether to shower or have a coffee, decided om the coffee first. By 12:36 pm I was actually showered, dressed and had lipstick on (I mean, really, did you doubt the lippy?). Yes, the above photo is me, today, AFTER I felt human.

I remember thinking to myself as I drove to the gym at 1 pm, “This is like two completely different days in one.”

At that point I felt like I could climb Mt Everest. OK, not quite, but the difference was SO stark. Unusually so. This slow, crappy start to days is not unusual, but often the bad is not so bad and/or the good is not such a massive improvement as what happened today. I really felt like a completely different person, physically.

I think there is a tendency for the general population to understand that mental health conditions may fluctuate, but tend to perhaps think of physical conditions as being more consistent in presentation – not totally consistent, of course, but shall we say mostly more consistent. Some are, I agree. Some are not.

I had steroid injections in my shoulders on Thursday so had deferred going to the gym out of an abundance of caution. I really wanted to go today, but waited to see what my body decided to do. My favourite gym leggings helped, of course.

Ultimately, I had a good workout.

1 km on the treadmill as warm-up
Leg press
Chest press (left shoulder clickity clicking on this)
Leg extensions
Seated row
Vertical knee lifts
Triceps
Leg curls
Back extensions
Lat pull-downs

The free weights area was a little overpopulated so I skipped biceps and shoulder press – they can wait for next visit.

As I write, it is 4 pm. I’m pretty much a “healthy” person.

This was a GOOD day, in that I came good as the day wore on. Sometimes we are not so lucky. OR we may wake up already feeling ready to take on Mt Everest. The issue is, we never know until we open our eyes in the morning. One morning recently I woke up unable to bend my left knee. Another day (some time ago) I was driving when I suddenly realised I couldn’t turn my head to the right (to check for traffic). On both occasions the rest of me felt fine!

This unpredictability makes planning life difficult. In time, my new medication hopefully will make everything more stable: it is still early days. But for many of us, today (or variations thereof) is what we live with. It can be hard for those around us to understand, especially when we do not LOOK sick. The invisible illness scenario.

The recent shoulder issue is a classic example of that. I LOOK fine. But reaching forward to put stuff in the microwave, or turn on a power switch, or turn on a tap were problematic. Lifting my arms about chest height, or anything involving internal rotation. Getting dressed was super challenging. Let’s not even discuss bras! But I LOOKED fine.

I can generally go with the flow because I’m retired. I’m not trying to get kids ready for school or meet a work deadline. I’m not trying to cook for a family of six. I really feel for those patients who have these types of responsibilities.

To my fellow patients – you are not alone. There are many of us out in the world facing similar challenges.

To everyone else – just because you can’t see something, doesn’t mean it isn’t there. You aren’t living the daily, sometimes even hourly, challenges. Support your family member, colleague, friend or patient.

Me? Hey, I just hope tomorrow is as good!

May 19, 2024

Robyn DunphyLeave a comment

Feel Like I’m in a Holding Pattern

It goes like this. On April 6, 2024 I started my NINTH psoriatic arthritis medication. Sequential, not together! Some medications have a loading dose period: this is one of them. So for four weeks I have injections once a week. Then I move to monthly injections. The first monthly injections are the week after the last loading dose injections, so effectively the patients have weekly injections for five weeks in a row.

You’ll notice I said injectionS – no, that is not a typo. The dose is not available in Australia in one pen, so I have to use two pens. This is not a problem for me as I find the pens really easy to use.

A previous biologic I was on was fine during the loading phase, then when I got to the normal doses, in that case an injection every eight weeks, I found it wasn’t as effective. I’d be great for about three weeks, then steadily feel worse for the next five weeks. Not a great situation to be in.

So, while I feel very good right now, I am waiting until June/July to see if this medication will be effective for the full four weeks between injections. Of course I am hopeful! But that is why I feel like I am in a holding pattern. There are things I want to do, get involved in, but I feel I can’t yet commit to anything that involves other people until I know how this treatment is going to pan out longer term.

At least I’m not taking any NSAIDs or prednisolone and I’ve taken Panadol Osteo about three times a week. YAY me! Or YAY the new medication. Because I’m not taking those additional medications (and I’m moving), I’m also managing to shed the weight gain that occurred while I was taking them. Thank you, 2023. Not my favourite year, let me tell you.

Another aspect of being chronically ill that is driving me nuts at the moment is the amount of effort required to remain, well, functional. So much planning goes into ensuring I get the movement required, balancing with the rest required. Then of course I’ve just had nine months of rehab exercises from first the knee replacement surgery then the ankle surgery. Not to mention the cast and the knee scooter and the moon boot! At the moment I’m kind of on the come back trail: the last four weeks have been good, let’s keep going. My first walk after the ankle surgery was February 14, a whole 0.8 of a kilometre. Now is much better.

I drop my target step count on the days I lift weights, which is every third day. Some days the weather may impact my step count! This is Melbourne, after all: we can have sunshine one minute and a howling storm five minutes later.

Garmin weight lifting/resistance training record for a month.

Reconditioning one’s body after nine weeks essentially immobile when that body is already challenged by psoriatic arthritis (and, umm, advancing years) requires a bit more planning that usual. Yesterday was a classic case. I did not make my 7,500 steps. I needed another kilometre, but for whatever reason/(s) a few things were grumpy by the end of the day. I opened my front door. Stood there for about 30 seconds and decided (sensibly) this was not happening. Closed the door and came back inside!

My lower back did play up off and on once I got moving again. Being “misaligned” for nine weeks on the knee scooter then the moon boot was not something my back muscles and left glutes liked AT ALL, I discovered. Lots of heat packs and stretches involved and all is now back to normal.

In summary, some days I end up feeling as if all I do with my life is work at keeping this disease under control. In the early years, I was still working, I had a purpose to keeping it under control. Now there are days when I wonder why on earth am I putting in all this hard work? Which is why I need to be DOING something other than just “keep active”. I need to have something to DO. Which explains the holding pattern dilemma. Thank goodness for my psychologist allowing me to vent!

I’ll get there! It is just a frustrating time and we all have them.

I’m still happy to be past the tip of the bell curve (top photo) for my daily step count given my situation. And remember, that is only Garmin wearers, many of whom will be very active, not the whole population!

By the way, I’m freaked out by the number of people that are freaked out about patients injecting ourselves! Many diabetics have been doing it for years! I’m not sure why we (i.e. those with other conditions) are seen any differently.

April 26, 2024

Robyn Dunphy1 Comment

Are You In The Running For A Gold Medal?

No, I don’t have one, at least not yet. What IS she on about, I see you wondering. Let me recap. Back in May 2023 I wrote about Crossing My Fingers – Again. As it turns out, I was counting my chickens before they hatched. I saw my rheumatologist a week before my (latest, second) knee surgery and the decision was made no, the medication I was on was not working. HOWEVER, because my knee surgery was looming, I couldn’t start the next, the eighth medication, until ten days after my surgery due to infection risks, it being an immunosuppressant. This new medication can take twelve weeks, roughly three months to work – or more. Here we go again, I thought.

I started the new med in the second week of August. About three weeks ago I mentioned to my GP that if anyone were to ask, I would say the new medication was working about 50%. I qualified that statement by saying, “But the question is really, 50% of what? 50% of the maximum efficacy of the medication, or 50% of what I expect?” Hey, I’m an accountant – percentages make sense to me!

At my rheumatologist appointment this week, I relayed that conversation to him. I then added, for example, what percentage of normal can I expect to feel? 100% normal? 80%? Do we have a ballpark number? He sat back in his chair and said that was a very interesting question, he’d never heard it expressed like that. He told me, “We always aim for 100%, but don’t always make it”.

It is interesting to note that in cited clinical trials, on my new medication at the one year mark 68% of patients in the trial experienced “less joint pain and swelling”. Only 68% of patients? Only “less”, not “it had all gone away”? I’m not linking to the study results as I don’t name the medications I take simply because what doesn’t work for me might work perfectly well for other people and I don’t want to make any other patients hesitant to try medications. After all, we already know from my pharmacogenomics testing (click the link for great information) I have metabolisation issues with many medications (some too fast, some not at all, etc) – best not to use my personal experiences as an example of the efficacy of anything!

I actually don’t expect to achieve 100% of normal. My disease, psoriatic arthritis (PsA), like a lot of other chronic diseases, is A) not (yet) curable, and B) progressive. My patient understanding is that we hope to slow progression, not necessarily be able to stop it completely.

My rheumatologist (let’s call him Dr R) suggested I think about it like the Olympics – not everyone gets a gold medal, some people get silver. At the time, this sounded reasonable.

As I was walking the next day and thinking, always dangerous, I thought to myself, “Hang on a minute, in every race someone comes last!” And all the positions in between. Yes, every person who stands at the starting line hopes to get a gold medal, I know this, but only one does. I’m not sure this is the best analogy for Dr R to use. In fairness to Dr R, I think he came up with the Olympics on the fly, knowing my exercise strategy and thinking it fitted with the patient in question (me).

The initial three months have passed and yes, in the last two weeks I have started to feel much better. I have more energy, I found myself singing to the radio in the car (always a good sign) and my strength is slowly returning. At one stage I couldn’t lift my four litre saucepan if it was full, let alone do a six kilogram bicep curl. This was not just about strength – my hands and wrists were really sore if subjected to any load (saucepans or dumbbells), so although the biceps were quite happy, the wrists were not – we now have some improvement. I was waking every morning with my hands in a lot of pain and had difficulty bending my fingers (a complete reversal from when one hand had to be splinted to stop it locking into a fist). My hands are still a bit “grumpy” in the mornings, but at least they are usable!

The above photo was taken on October 22 – I wanted to wear an old bangle on a night out. As you can see, that wasn’t happening. My hands are still too swollen and the joint at the base of the thumb is bigger than it was in my pre-PsA days. So while I feel better overall than I did three months ago, am I “normal”? No. I think I might be at about 70% of normal taking into account my age which brings it’s own issues, irrespective of my PsA!

How could I measure it? Good question, I’m not sure. If I took the leg press as one measure, I am currently only doing 65 kg because I’m coming back from total knee replacement. My personal best since I was diagnosed is 160 kg. 65 is 40% of 160. But using that as a measure would be being unfair to the medication, as I am restricted in how much I can lift at the moment, being post-operative. I feel if it wasn’t for needing to be careful of my new knee, I could lift much more.

I’m not taking any pain medication other than Panadol Osteo, that’s a good measure, but I am supplementing with a low dose of NSAID as needed. I’m certainly doing more Movement As Medicine than I was before starting this medication: that is a very good sign. I’m writing (today at least).

Will I get the gold medal? I’m very wary of that as an analogy for treatment “success”. Too few people get gold medals in the sporting arena. How many of us come last? I know Dr R’s heart was in the right place, but I think expectations is something we perhaps need to look at more closely. What is a realistic expectation of improvement on any particular medication? Or, for that matter, with any particular condition?

As I stated above, this is my eighth medication since I was originally diagnosed in 2014 (with rheumatoid arthritis, later rediagnosed). That’s not counting the ever-present “extras” like NSAIDs and corticosteroids. But where am I in the race?

I think I know the answer: we don’t know! Personalised medicine is a rapidly developing field, but doesn’t cover everything yet. So I’ll keep running this race and hope I don’t end up last. Meanwhile, I’ll try to think of a better analogy. Maybe trying to hit sales targets? Not really my scene, but at least we’d stand an equal chance!

19/11/2023 Edited to clarify: by the phrase “So I’ll keep running this race and hope I don’t end up last” I mean I’m staying on this medication and hope improvements continue in the coming months. It occurred to me overnight that I may not have been very clear! My inflammatory markers were very nicely reduced too, which was good.

November 18, 2023November 19, 2023

Robyn DunphyLeave a comment

Rattle Ya Bones Day!

Rattle Ya Bones Day is coming! What is Rattle Ya Bones Day, you ask? I’m so glad you asked, because that’s what I want to tell you about!

Rattle Ya Bones Day is a National Day of Awareness for all muscle, bone and joint conditions. It’s held every year on October 31.

Let’s look at some statistics around musculoskeletal conditions.

1 in 3 people have one or more musculoskeletal conditions (That’s about 7 million of us, give or take)
Musculoskeletal conditions aren’t just conditions of old age. Babies, children, and young adults are affected as well
93% of people told us that their lives were negatively impacted by their condition
58% of people are of prime working age (25-64)
Musculoskeletal conditions are the most common cause of early retirement (yes, that includes me!)
Musculoskeletal conditions cost the economy $55 billion each year.

Given 1 in 3 people have one or more musculoskeletal conditions it is highly likely even if YOU do not, a member of your family, a friend or co-worker has a musculoskeletal condition. Regular readers know I do: psoriatic arthritis. I also have a bit of osteoarthritis and minor scoliosis of the spine. Rattle Ya Bones Day is very relevant to me!

Remember, quite often our conditions are invisible: I’ve written about that particular challenge before, in “We Don’t All Look Sick! Invisible Illness“. This is a photo of me I used in that article – I don’t (I hope) LOOK sick, but yes, I am.

This year’s message is “Get informed and Get supported”.

Learn more about conditions like arthritis, back pain and others, to help you and those you love live well.

On the evening of October 31, MSK will present the Koadlow Community Lecture, Back Up: Why back pain treatments aren’t working and the new science offering hope.

The 2023 Koadlow Community Lecture will be presented by Liam Mannix, a multi-award-winning national science reporter for the The Age and the Sydney Morning Herald. Liam is one of the many who live with back pain, and he takes his own experience as a starting point for his recently published and highly praised book of the same title.

If you are interested, click here to find out more!

Support Musculoskeletal Australia’s work: Please donate today. Your support plays a crucial role in enabling MSK to provide free resources aimed at improving the quality of life for people impacted by muscle, bone, and joint conditions. By donating, you become an agent of change, ensuring that those facing these challenges receive the support and resources they deserve. Together, we can make a lasting impact and create a brighter future for everyone affected by muscle, bone, and joint conditions.

Together, we can raise awareness, share information, and foster a more compassionate and informed society regarding muscle, bone, and joint conditions. Join us on Rattle Ya Bones Day 31 October as we strive to make a positive impact and create a place where everyone has access to the support and resources they need.

Musculoskeletal Australia also has an on-line shop where you can buy items that may make your life or the life of a friend, family member or colleague just that little bit easier. Highly recommend visiting! The kitchen page is particularly useful for me, with dodgy hands.

Need More Information?

Learn about musculoskeletal conditions
Speak to our nurses on the free, confidential National Arthritis and Back Pain+ Help Line 1800 263 265
Sign up for our e-Newsletter
Making the invisible visible: Australians share the impacts of musculoskeletal conditions on their lives

Perhaps your organisation may be interested in supporting Musculoskeletal Australia and/or Rattle Ya Bones Day? Your organisation’s support will help create awareness around the wide variety of musculoskeletal conditions and the impact they have on people’s lives. Contact us (that link is to MSK, not me personally 😊) to learn more.

Get informed. Get Supported. Rattle Ya Bones Day

Disclosure: I am a member of the Consumer Advisory Committee of Musculoskeletal Australia.

October 5, 2023October 5, 2023

Robyn DunphyLeave a comment

Two Cars in One Disability Car Park?

Today the final report of the royal commission into violence, abuse, neglect and exploitation of people with disability was released. At the end of this article are links to information about the findings.

By sheer coincidence, on Wednesday this week I had an interesting encounter in a disability car space.

I shared the information on X (previously known as Twitter). Some of the responses blew me (and many other people) away. No wonder the royal commission was needed: just at this simple level of disabled life the responses were incredible. Many were very quick to blame me for the black car’s illegal parking!

Let me set the scene. I’d been for a skin scope late in the afternoon. I drove from there to my local shopping centre to collect a prescription from the pharmacy and grab four items from the supermarket (i.e., not a long visit to the shopping centre). I parked my car in the leftmost disability park beside a pillar – that is no-one would be parking to my left. Looking at the picture, you can see the pillar to my left, creating a gap between my park at the next bank of spaces.

Picture of two cars squeezed into a single disability parking space — This does not work!

When I came back from my quick errands, I discovered someone had decided to squeeze in beside me. The yellow line demarking my space can be clearly seen under the left side of the black car’s number plate. There was no way known I could get into my car, even if I’d been a perfectly healthy person back in my thirties!

The car was not displaying a disability parking permit. If the driver did have a disability permit, there is no way the car would be parked as it was. The permit in the window of that car is a residency parking permit – it allows street parking where the car owner lives. The purpose of those permits? An example is a friend of mine lives near a public hospital. The residents in surrounding streets all have these permits, otherwise they’d never get a park near their home.

I called the shopping centre management. They suggested I just wait, the driver would probably only be a few minutes. Probably? What if the driver had gone to dinner at a local restaurant? Gone to the gym upstairs? Centre management agreed to send a security guard. I waited. Several other customers stopped to lend me their emotional support, even though they couldn’t do anything. My plan at that point was to ask the security guard if he could get into my car and back it out for me.

Near the end of this adventure, I was turned away from the cars, watching the escalator to see if I could spot the security guard. I turned back to see the boot of the black car open. The driver then tried to sneak into his car unnoticed! I suspect as he returned to his car, he saw my bread and backpack on my hood and realised he’d stuffed up. Yes, it was a he. Not a young one either, I’d hazard a guess my generation, a tad younger than I am. He was hoping to escape unchallenged.

I’ll admit I was not happy and I did swear.

Me: “How the fuck could you do that?”

Him: “Easy!”

Lovely attitude. As he drove away he screamed at me something about photos, but photos was the only word I heard. I assume he didn’t like that I had taken evidentiary photos of him.

The security guard turned up just after the driver had left. We discussed the incident and I provided all necessary information, including the photos. Drove home and made a police report.

That is not the end of the story though. I posted the saga to X.

So I park in a disabled spot to go to pharmacy & buy bread. I come out to find someone has squeezed in beside me. Like what the actual f***? I can't open my door enough to get myself in my car (knee surgery, PsA, etc) And no, I'm not hiding his numberplate. 😡😡😡 — Click image to see the full thread.

Well, all hell broke loose! I was told I should park in the middle. Umpteen times. Let me assure you this doesn’t always work. Different disabled people need different space to enter and exit vehicles. They may have any of a walking stick, crutches, a walker, a wheel chair or even a hoist involved. When I park my car, I don’t know what the next vehicle may need or whether they will park to the left, the right, or in the middle of the adjacent park (to my right). It will depend on their needs. By parking to the left as I have, I am allowing maximum flexibility for the next car and given I am next to a pillar, I am not restricting anyone who may park to my left. I also have the room I need. Well, at least I did when I parked my car. Yes, parking in the middle is standard and necessary in narrow, normal car parks. It doesn’t quite work that way in disability parking spaces.

Different parking spots are marked differently. Here are two disability spots at a local park. As you can see, one is delineated, the other not.

Disability parking at a local park. One delineated, one not

Then the issue of MY disability parking permit came up. Shock, horror, it was hidden by my backpack in the photo. Lots of responses telling me I was at fault as my permit wasn’t where it was supposed to be, according to them. I have NO idea how this excuses the illegal parking by the guy in the black car, but here we are.

According to VicRoads, I was fine. I can assure readers it WAS clearly visible on my dashboard, not just where other people thought it should be.

An Accessible Parking Permit:

can only be displayed when the vehicle’s transporting the individual who the permit was issued to
must be clearly displayed so that the permit number and expiry date are visible from outside the vehicle. — The Rules!

One reply even asked me what I’d do if all the disability spots were taken, as if to imply I really didn’t need one anyway – now what on earth that had to do with the guy illegally parking is beyond me.

Several seemed to think the only “disability” I had was my recent knee surgery, rather than see I had clearly stated PsA. No, I don’t expect people to know what PsA is – we are a mere 1% of the population – but if you don’t know, perhaps ask – do not assume it is “nothing”.

Many people were supportive, here are two examples:

Others shared their own experiences.

However, the number of replies that effectively blamed me, the disabled person, for the OTHER person’s illegal parking was astounding! I had to wonder how many of them have snuck into disability car parks when they shouldn’t. Guilty consciences? There are other considerations too. In my case I needed to be home on time to take medication at a specific time. Another person may have been heading to a medical appointment. Being stuck there for any length of time could be really problematic for some people.

Edit 30/09/2023: After publishing this, I had an another thought. There was a lot of emphasis, in the replies to my original thread, on how I should prevent others doing the same thing. Why? Even one of my own friends said it! How has society got to point I (or anyone) can’t just depend on others to DO THE RIGHT THING? Why should we have to be on the defensive ALL the time, to our own detriment (in this case, less space)? Just do the right thing! It isn’t that hard.

Edit 05/10/2023: On the weekend following the above experience, I happened to be in the same car park and took some photos to demonstrate the practicalities we face. The experience that day just happened to be a good example of how parking in the middle doesn’t always work.

In above photo, I have parked in the first disability spot in this part of the car park. as can be seen, there is a pillar on my right (driver’s) side and a delineated clear space to my left. Quite obviously I am NOT parked in the middle of this space: I think it is obvious that had I parked in the middle I would NOT have been able to open my car door fully due to the shopping carts left in the space in front of the pillar. Also, even to open the door as I have, I am clearly NOT within the delineated space. So I moved to another space. Let’s see how that works in practice.

In this space I have parked in the middle. Again there is a pillar on the driver’s side, so a space between my car park and the next one over. However, see where that car (my driver’s side) is parked? Right on the edge of their space. So, if the pillar was not there, I would not have been able to park in the middle – as can be seen, my open door extends over the edge of my car space and would hit that vehicle. Or I could come back to my car and find that space full of shopping carts, like the previous photo. Again, I’d not be able to fully open my car door, therefore would be unable to get into my car. The car parked on my passenger side is parked in the middle of that space, but is a smaller vehicle, may not need to open the door fully, or there may be pillar space on the passenger side of that vehicle and perhaps it is the passenger, not the drive, that needs the space. Every case is different, which is something people forget!

End of edits

No wonder we needed a royal commission! This was, in comparison to some, a very minor issue. The social attitudes it highlighted were shocking.

New Disability Rights Act needed to end abuse and exploitation, royal commission finds – The Guardian

Australia’s Disability Representative Organisations call for healing – Inclusion Australia