Tough, But Worth It!

Yes, I’ve been very quiet. VERY quiet. I know, I’m sorry. Recovery from my November surgery took quite a lot of effort. On top of that, the mobility restrictions meant my psoriatic arthritis decided to complain, so I was fighting on two battle fronts.

My ankle surgery took place on November 28, 2023. My first completely pain/discomfort free walk was March 22, 2024. 16 weeks and 2 days.

I’m not repeating the details previously documented, so if you are catching up, read the surgery article linked above first! The moon boot was better than the cast and knee scooter for sure. I could shower without “bagging” my leg in plastic bags! I didn’t have to sleep in the moon boot! I was no longer doing three-point turns in my small apartment or constantly reversing in and out of spaces. I could drive! I was no longer so totally dependent on other people, I had a modicum of freedom.

I was allowed to go to the gym to do upper body work. ONLY upper body work, but at least it was something! The gym staff looked at me a little askance, but let me in.

I was to gradually increase the percentage of weight on that leg each week and could try proper shoes at week four of moon boot life. I will admit I snuck into shoes a couple of days early because the moon boot meant my legs weren’t the same length and my right piriformis muscle was not overly impressed with that situation. I was VERY careful though.

At my 12 week post-op my surgeon was very happy with how everything had knitted and I was finally allowed to go to the physiotherapist. It is amazing how weak your calf and ankle muscles can become after 12 weeks of no use. Surprisingly, this physiotherapist wasn’t as bossy as the knee physiotherapists: exercises every second day instead of every day.

On February 14 I started short walks – between 500 and 800 metres depending on how the ankle was feeling. I managed my first 1 km walk on February 20 and have slowly built up from there. March 21 I walked 2 km in one hit! I should add I was doing multiple walks a day by this stage, with the physio’s permission.

While the ankle/foot wasn’t really painful, it wasn’t 100% comfortable either until March 22. That was the day I felt free!

Funny conversation with surgeon at the 12 week post-op.

Me: “So I have no restrictions now?”
Surgeon: “No, you’re fine!”
M: “So I can do the leg press?”
S: “Sure!”
M: “So what weight can I start at?” (Thinking to myself 50 kgs seemed reasonable to start)
S: “Oh, just the plate, no weights!”
M: Thinking – that sounds like a restriction to me!

It always pays to clarify. I think maybe he didn’t consider his nearly 70 year-old patient was going to be doing things like the leg press. Have I got news for him!

I have interesting rehabilitation exercises, such as standing on one leg for 30 seconds and calf raises on one leg. Now, to be honest, I still cannot do the one-legged calf raise, but I’m getting there with a little help from the other leg. A little less help each day. Hoping I can do the single leg calf raise by my next physio visit!

So yes, it was well worth it, but man alive, am I glad I only have two ankles. I’ve learnt a lot of this experience and will plan the next one with the knowledge I now have about how VERY different this is from knee replacement surgery.

Of course not every ankle surgery will be exactly the same as mine. Other patients may spend less time in a cast for example. Or more time in a moon boot. It definitely isn’t as easy as knee replacement though.

Due to the lack of exercise during those weeks of recovery, my back is not happy. It is getting happier now I am back to a more normal routine, but some days have been quite tough. Moving is not as bad, most of the time, as being stationary, luckily. My back has been under control for some years, due to the work I keep doing on my posterior chain to support it, but at my age we decondition faster than in our twenties – I’m having to build up that strength again. The shoulders and wrists didn’t like the crutches either – the psoriatic arthritis complained. Both wrists and shoulders are now improving with increased exercise and no irritation from the load of crutches.

One thing I wasn’t happy about was once I could walk 1 km, I discovered I’d lost another point on my VO2 Max reading. I was devastated. While I don’t do high intensity exercise and therefore don’t expect a high VO2 Max reading, I do want something healthier than “poor”! Thankfully, I’ve worked hard enough this week (shown below) and last week to recover that measly one point. The lost of the one point had worried me because it was the continuation of a downward trend that started early 2023 and so desperately want to turn it around and get back to where I was.

Steps per day March 19 - 25
Formal measured walks per day March 19 - 25

So that’s it for this ankle. When the next one will be done is debatable. Naturally the surgeon looks at risk mitigation from the perspective of the risks of surgery. I’m looking at it from the recovery perspective. It doesn’t matter how brilliant his surgery is if I am not well enough to manage the recovery properly and at this point in time I’m still not sure we will get my psoriatic arthritis under control. I needed my wrists, shoulders, piriformis and back to be better behaved. I managed, but it was tough.

Onwards and upwards! I need another 3,700 steps today to hit my daily goal, so off I go!

Robyn Dunphy3 Comments

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.

Related: Changing Medications – What Can You Expect?

Robyn DunphyLeave a comment
Picture of two cars squeezed into a single disability parking space

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:

Supportive replies

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

Robyn DunphyLeave a comment

Down with the Bad, Up with the Good

Thankfully, my second knee replacement surgery is back on the agenda! Woo hoo! I’m excited!

I suspect some people may wonder why I am getting a knee replaced if I can walk 7,500 to 8,000 steps a day and do “formal” walks totaling 4 kilometres a day. How can my knee be THAT bad if I can do that? Only due to great care and diligence, let me tell you. The aim of this article is to give some tips on how to manage walking leading up to surgery. If I don’t replace the knee, I am very limited in what I can do. I can’t spend my life walking in a straight line.

As described in Crossing my Fingers – Again, we felt my new biologic was finally kicking in. My GP wanted me to keep my medication dosages stable for a week or two, which we did. On May 30 I dropped my NSAID dose by half and have managed to maintain that. I saw my GP again on June 6. We felt if I got a surgery date, we’d make it. So I have a date! Next month! Now, we recognise that during the 10 days before surgery where I have to be at zero NSAIDs, I MAY have to increase my pain medication to compensate, but as this is only for 10 days, that’s acceptable. I did something similar for the last knee surgery too (there are links at the bottom of that article to the full knee replacement story). I also have to reduce my prednisolone, which I have starting doing this week. I’m NOT pain free, by any means, but I’m surviving!

I do have to be very careful to keep the bung knee in line, no twisting! I can’t fully extend it, although flexion is not quite as bad. Bending down to pick something up off the floor? OUCH! Having it bent while sitting at a dining table, for example, results in pain when I first get up from the chair.

I need to keep exercising to ensure I’m ready for rehab. Last time I was doing glute bridges on the dining table. Sadly, down I’ve downsized, my dining table is doubling as a desk, so I have to find other ways.

Here are my walking tips.

  • Make sure you have good, supportive shoes. This is an absolute must.
  • Choose a pleasant place to walk if you can. The photo above is where I love to walk. It is encouraging!
  • Keep an eye on the terrain. If I accidentally step into a small pothole with my bad leg, the pain is NOT GOOD.
  • Pay attention to your posture. If walking in a shopping strip, shop windows can be useful. In a park, check your shadow. Is your back straight? Shoulders back?
  • You may start limping because your body may decide to shorten your stride on the bad leg without you even thinking about it. Try to maintain the stride length if the pain is not too bad. This will depend on several things: what pain management program you have going, how bad the joint is, etc. You will need to “warm up” first, but I find I can control the limping without increasing the pain. Why is this important? Because you don’t want to shorten and/or tighten soft tissue like tendons prior to surgery if you can avoid it.
  • Down with the bad, up with the good. When negotiating steps, stairs or gutters on pavements etc, down with the bad leg, up with the good leg. Why? Less bending of the bad leg (especially bad knees). I stupidly walked down the stairs to the car park in a hospital the other day. Very bad decision, I should have waited for the lift! Even with this tip, stairs are hard to negotiate!
  • Inclines and declines. Where I walk there are very slight (well, very slight for MOST people) inclines and declines. Some on the actual path, but also bridges like this. While I have little problem with the incline, the decline is difficult. Depending on where the damage is in your knee (or other joint) you may find the reverse, or you may find both are a little challenging. Slow down, hold the rails if there are some, maybe decide that track is not for you in future.
Incline Decline
  • Don’t walk until you’ve “thawed out”. As we know, psoriatic arthritis is notoriously bad in the mornings. I take time in the morning to gently thaw myself out. The knee awaiting surgery will most likely also stiffen up overnight. While some mornings are better than others, I rarely do my first walk of the day before 10 am, sometimes not until 11 am. Even then, the first 200 metres or so are warming up.
  • Split the walking if at all possible. I’m retired, I can walk whenever I like, but obviously some patients are still employed. If you can break up the walking, do. At the moment it takes me about 15 minutes to walk a kilometre. You can fit a kilometre in here or there throughout the day. Take a slightly shorter lunch and a longer tea break, perhaps. Not possible in all jobs, I know. Winter means walking after work is not really appealing. Think about ways you can split the load.
  • As we all have different pain management regimes, I can only speak of mine. At the moment I am on a slow release (SR) twice a day and have some instant release (IR) for breakthrough pain. On a day where I’m not too bad, I may need no IR at all. If I am feeling the knee is a little too grumpy, I’ll time the taking of an IR (maybe only half) so that it kicks in before I start walking. This is all about listening to your body.
  • When you get home from a walk, I suggest elevating your feet for a while, but do not allow your legs to “freeze up”.
  • Remember to adjust your goals if you are doing other “stuff”, as I discuss in Why is There a Dip in My Stats?.

Once I have done the first walk of the day, I usually have very low pain levels for the rest of the day. We are all different, our joint damage is different and some, like me, have underlying conditions such as psoriatic which do complicate matters. So while that is my situation, I accept it may not be yours.

I also have two ankles requiring surgery. The left ankle is very problematic at the moment. When I was on my higher dose of NSAID I would know when I hit 500 metres on my first walk of the day as all of a sudden, the ankle would stop hurting as much. When I dropped the NSAID dose on May 30, from then it has taken about 800 metres before my ankle stops hurting. Hence it is important I time that IR dose properly if I feel it necessary. When I say “stop hurting” do I mean pain free? No, sadly, I don’t. Some days are better than others, but the level of pain is low enough that I can keep up the walking. And, once it is gone, it is pretty much gone for the rest of the day, thankfully.

We are all different. Please talk to your doctor and/or physio about what may be specifically appropriate for you.

Do not expect every day to be the same. For some weird reason this morning was awful for me. I even battled to pull my sheets out of the washing machine (nothing to do with my knee). I had a nanna nap after lunch (VERY unusual for me). Yet now, as I write, I am fine. I reduced my prednisolone yesterday morning, I think my body is adjusting to that reduction.

If you have any questions, I am always here to help if I can.

Addendum: The following is a good article from The Guardian about walking technique.

‘I’m not just faster, but taller’: how I learned to walk properly – and changed my pace, posture and perspective

Robyn DunphyLeave a comment
Walking Graph

Why Is There A Dip In My Stats?

Above is a snapshot of my walks for the last four weeks. In my last article I wrote I was improving. Yet we see there was dip yesterday. Why is this so? You’ll be pleased to know it is a deliberate dip. A very deliberate dip, in fact. Recently I wrote Let’s Revisit Pacing. If you are new to my work I strongly suggest you click that link and read that first as this is, essentially, a sequel. A real life example.

Improvement has allowed me to get to the point I am walking 4 kilometres each day: but that was all I was doing! At least that was my primary use of energy over and above actually fueling the bodily functions that keep us alive: pumping blood, breathing, digesting food etc.

Yesterday I did two activities that require energy, that chew through our internal battery charge. I had a shower and I did grocery shopping. This wasn’t a “nip down to the shops and grab a pint of milk” trip, this was a monthly stock up. When I got back to my apartment it was four trips between my apartment and the car to bring everything inside. Then the effort of putting it all away.

When I initially wrote about what I call our internal battery, I stated I didn’t have a charge meter on my arm! I do now: my Garmin watch. Here it is for yesterday (Saturday) compared with Thursday. For whatever reason, I hadn’t charged my battery as well overnight Friday night, so I was already a little low on fuel Saturday morning. I will state I am not sure how accurate this is for chronically ill people – I’m working on watching it carefully – but it is certainly an indicator. Blue is charging your internal battery, orange is using it up.

Another point to note is that most of the step counters will not register steps, or register steps accurately, if you are pushing a shopping trolley (or similar activity). Very annoying, as I think I walked about 1,000 steps just around the supermarket. Consequently there is also a dip in my steps for yesterday, even though I was moving. For those wondering the blue bars below are where I did not achieve my daily goal of 7,500 steps. Green bars are goal achieved!

Why not 10,000 steps you ask? Ahhh, well, yes, I have that covered too! Read We Need Personalised Numbers to understand the 10,000 figure is a myth.

Healthy people reading this will most likely understand shopping uses energy. They might raise an eyebrow over the shower taking energy. Trust me, for most of us chronically ill patients, a shower consumes energy. Many of us need a rest afterwards. I don’t usually, but I do at the moment.

What I did yesterday was adjusted my activities so that I did not Boom/Bust. I don’t need to burn through my internal battery one day then be wiped out for the following two or three days. Having a goal of 4 kilomtres a day is great, but at this stage of my “comeback” I am not risking any post exertional malaise (PEM). If I have to do something, like the grocery shopping, I will adjust my walking goal. Hopefully. in a few months I won’t need to: I’ll be back to my “normal”. Right at the moment, I’m not taking that risk. When I do head back to the gym for strength training, initially I will drop my walking goal for that day.

Using Movement As Medicine is not a simple “just get out there and walk”. It requires careful planning and monitoring. I hate “bust” days and monitor myself very carefully to avoid those days. Over time, following the pacing principles, I can do more. Pacing is the golden rule here! Today I walked 5 kilometres. I’ve been working up to it and I did nothing else that used energy today (other than writing this, of course).

Robyn Dunphy1 Comment
Gardiners Creek

Crossing My Fingers – Again

My apologies for my silence over the last six weeks or so. I counted my chickens before they hatched.

On March 12 I published Changing Medications – What Can You Expect?. At that point it was roughly ten weeks since I had changed my medication for psoriatic arthritis (PsA) and I was finally feeling as if the new medication was starting to kick in. I was a little overly optimistic, as it turns out.

Also, although not mentioned in that article, the whole situation became more complicated when I slipped/tripped and fell in the shopping centre car park on March 8. What I initially thought was a simple trip ended up with me back in my orthopaedic surgeon’s office. To cut a long story short, it was decided the time had come to replace my right knee. If you are new to my story, I had the left knee replaced in 2020.

The problem was the slight improvement I’d got overly hopeful about in March did not continue. I was quite quickly back to waking in considerable pain and struggling with malaise and energy levels.

At the time I saw my perioperative physician I was still on 400 mg of Celebrex and 15 mg of Prednisolone a day. In order to undergo surgery on May 10 (the scheduled date) I needed to reduce the Celebrex to zero by May 1 and the Prednisolone to 2.5 mg per day by a week before the surgery. Was this going to be a challenge, I wondered to myself. I certainly didn’t want to just stop the Celebrex cold turkey on May 1 as clearly I was still in need of it to function on a daily basis. I’d needed friends to drive me to a myotherapy appointment and my pre-op Visionaire scans. Essentially, I wasn’t too chipper.

I discovered I had another infected tooth – maybe THAT was the problem? Had that tooth removed. It was a rather complicated event as the tooth was part of a double crown. I spent over an hour in the dentist’s chair, most of that time was spent removing the crown and temporarily recrowning the uninfected tooth. The actual extraction was a minor part of the visit. However, removing the tooth did nothing to improve my overall inflammation.

On April 17 I could see May 1 looming and decided I’d see if reducing the Celebrex was at all possible. Celebrex comes in capsule form – you either take a capsule or you don’t, there’s no pill splitting here! So I dropped from 400 mg to 200 mg on that Monday. Deliberate timing, as I had a GP appointment on the Tuesday. If anything went wrong, I already had an appointment! I also had accepted another kind offer from a friend to drive me to that appointment.

I woke up on the Tuesday in a very unwell state. While I managed to sit up in bed and get my feet to the floor, I could not actually stand up. This was a bit of a worry, to say the least. As gross as this sounds, I’m sharing for transparency: I was very worried about actually getting to the toilet in time. I tried using my walking stick to give myself some leverage, but doing so hurt both my hands and my shoulders due to the angle. Eventually I managed to stand upright and shuffle to the bathroom. While I was on my feet, I shuffled to the front door and unlocked it from the inside – if I had to call an ambulance, at least they could get in. Obviously I was in no position to start reducing my anti-inflammatories!

After various communications between my GP, rheumatologist and knee surgeon, the knee surgery was cancelled for the time being. My CRP and ESR inflammatory markers were rather high and THAT was while I was on all this medication. What would those markers have been reading if I was on no anti-inflammatories?

I did a damn good job on my rehab of my first knee and it is FANTASTIC! I want to be able to achieve the same result with the second knee replacement. At that point in April I was able to walk a mere 800 metres at a time because my ankles were so painful, the left one in particular. I knew that the extra loading of that ankle while recovering from surgery for the right knee could be very problematic. All things considered, cancelling the May 10 date was sensible, but very disappointing. I want the knee done, but there is no point in being a less that optimal patient if that can be avoided.

My next new medication injection was May 4 and I was getting closer to the 24 week mark – SURELY it would start working!

On May 4 (a Thursday) I gave myself the scheduled injection. Nothing much changed until Monday May 8. I did feel an improvement. I managed to walk 1.5 km in one walk. In total I walked 3 km for the day. I have slowly built up during the week and on Friday I walked a total of 4 km over three walks – I’d hit my old goal of 4 km for the day. Saturday I walked 2 km twice. The possibility of post-op rehab is now looking more achievable! I’ve even walked at my favourite walking spot, shown in the picture above.

For those into graphic representation, here are the last 8 weeks. PLEASE NOTE Garmin changes the scale between the two periods, which makes the March/April bars look WAY higher than most of the April/May bars. And of course I haven’t finished today! Look at the total kilometres: 11.2 km versus 58.9 km

HOWEVER – I’m still on those same dosages of anti-inflammatories. I asked the GP about a possible test reduction and she was rather adamant that I give myself two weeks before we try to change anything. I haven’t even mentioned the pain medication I’m also taking or the Voltaren gel I am using on my hands and ankles.

While all this was happening, my rheumatologist scanned me for gout. The CT scan came back negative, which as the rheumatologist said is both a good and a bad thing. While it is good I don’t have gout, we are back to square one. Why is my inflammation so high? Is it merely that the new medication is taking its own sweet time to be effective? Or is my body being difficult?

Speaking of difficult bodies, I also did something rather adventurous. Click the image to go to the website.

While I am not going to go into detail about this test, it has been useful to me. My report was 29 pages long. To give you an indication, this is a summary of my genotype for the genes the test currently looks at.

We have changed two of my medications as a result. We also know to watch out for certain other medications in the future. This test does not yet cover every medication known to science, but it covers a lot. If you are interested, I suggest you speak to your GP about whether it may be useful in your situation. Yes, it is rather costly on a limited income but I see it as an investment in my health, given my situation.

Right now I am nervous that I am again counting my chickens before they hatch. Today is day eight of incremental improvement. I’ve managed to walk 4 km three days in a row, hopefully today as well. I have more energy. I’m writing. I haven’t ventured back to the gym yet, although I desperately want to.

In summary, as I said in my first article on the subject of changing medications, it is often not as simple as opening a different pill bottle. Even as I write, I do not yet know if this medication is going to be effective for me, but at least I have had eight straight days of improvement. I can exercise reasonably well again. This morning I woke with far less pain in my hands! So I’m crossing my fingers. The last blood test results showed a slight improvement in my inflammatory markers.

If you or someone in your life is changing medications, please be gentle. Be understanding. Be aware it may NOT be smooth sailing. 

Robyn Dunphy4 Comments
In hospital again

Changing Medications – What Can You Expect?

This article is to illustrate the challenges any patient MAY experience when changing medications. I am describing my personal situation: please take into account while reading ALL situations are unique to the individual. My aim is to help patients be aware that changing medications MAY not be smooth sailing. I also ask friends, family and colleagues, especially those managing staff, to be aware changing medications is not as smooth as simply opening a new bottle of tablets. Be supportive and understanding of the patient.

2022 seemed to be a year of gradual deterioration. I ended up in the emergency department (ED) a few times and was hospitalised late January 2023, I had an infected tooth extracted, I just wasn’t feeling good at all. In late December I suddenly realised it was almost the holidays and I was likely to have doctors taking holidays. I felt bad enough that I decided I needed to talk to my rheumatologist before Christmas. My rheumatologist squeezed me in on his last consulting day prior to the holiday season, December 22, 2022. His assessment was that my old medication (let’s call this Med O) had ceased working for me. I stress the “for me” – this is one of the individual aspects – it may keep working very well for millions of other patients!

He started me on a new medication that day. We’ll call this Med N (“N” for New). I was advised it is not good to take Med O and Med N together, I was to stop Med O. I was to start (more like continue, as I had already started) Prednisolone and Celebrex to manage the pain. With hindsight, I think Med O may have still been partially working, guesstimate here, at 40% or 50% efficacy. Because once I stopped it, I got worse!

Med O was a daily tablet medication. The mean terminal elimination half-life ranges from 9 to 14 hours, so the web tells me. So once I stopped taking it, there was no longer any lingering protection from Med O.

Most fellow patients reading this will be aware many medications do NOT start working straight away. I talk about this in Movement As Medicine, written five days after I changed medications. By that stage I had read the documentation and worst case scenario was I could expect improvement in six months! Best case scenario was maybe “some” improvement in about four weeks. That’s a big difference in timeframes. Both “some” and “improvement” are very open to interpretation, too.

Between Christmas and New Year I had a case of De Quervain’s tenosynovitis in my left hand, requiring an ultrasound-guided steroid shot as soon as my rheumatologist was back in the consulting rooms! Not strictly PsA related, but I’m sure there is always a connection with these things, like the hole drilled in my big toe bone!

By that stage I had only had the initial Med N injection. This medication’s schedule is first injection at Week 0, second injection at Week 4, third injection at Week 12 and every eight weeks after that. I certainly wasn’t expecting it to be doing anything much at the three week mark.

On January 20th I yet again presented myself to ED because just about everything was hurting, I’d loss strength in my hands (could not even wring out the dishcloth). I was not a happy adventurer. I ended up having three infusions of methylprednisolone over three days to try to knock on its head the inflammation raging through my body. For a few days afterwards I did feel better, but then started to slide downhill again. Called rheumatologist. His advice was to increase the Prednisolone to 50 mg per day, then taper off at a 10 mg reduction per week down to 10 mg, then stay at 10 mg per day. I’d never been on such a dose! Especially after three infusions! I had noticed breathlessness was an issue after I’d been discharged from hospital and once I increased the Prednisolone dose I noticed sweating and (the worst bit) palpitations at night. Every night. It was like my heart was beating in my ears. Very unsettling experience.

I have a nocturnal AV block. This means my heart skips beats every now and then. Let me tell you, when you have palpitations the missed beats are accentuated. My heart was pounding then dead silence. While it is only a few seconds, I still found myself anxiously awaiting the next beat.

I woke up on March 1st feeling decidedly unwell. Doctor time! GP Clinic squeezed me in with a different than my usual doctor. She listened to my symptoms explanation then looked at my rather elevated blood pressure and heart rate.

Blood Pressure

She wrote a letter to ED and told me to go home, pack a bag and head to ED. “Here we go again”, I thought. This was to be my sixth (I think, I may be missing one, I’ve lost track) trip to ED since October! While we both felt I was reacting to the Prednisolone, the obs were enough to need checking out. Bloods and a CT scan later I was sent home. I was not about to have a heart attack, so there was not much they could do. Yes, the picture above is me in ED on that day.

On February 28th I had reduced my Prednisolone to 20 mg a few days early because I was over the palpitations. While that had no effect (a bit early for the reduction to be reflected in my body’s behaviour) on the Tuesday night, Wednesday night I had no palpitations. I haven’t had any since that night either. Very happy about that!

Consider where I was at that point: Med N was still not being effective, and I was reducing the Prednisolone so the inflammation was increasing. Increased inflammation means higher pain levels. I was in a no-win situation at that point.

It isn’t all about the pain either. With my routines I can generally be pain-free by around 10:30 am, depending on when I get up, medication or no medication. It is the nature of the disease. The lack of energy and general feeling of unwellness was overpowering and that I can’t fix by 10:30 am. The effort required to do ANYTHING seemed too much. Having a shower? Tomorrow will do. Cooking? Toast was easier. Writing? The brain would not co-operate. I had to talk myself into walking, something I never have to do. Hydro pool? The effort required to get into bathers, drive there, get home and then shower just seemed all too much.

On March 9th I had my third Med N injection. Yes, technically a week early, but that is because somehow (do not ask) I stuffed up Week 4 timing. That’s OK, by the way, there is a window either side – I’d just confused myself. Cognitive impairment is worse at this time, naturally. I was still annoyed with myself.

FINALLY, March 11th (yesterday) I woke up and the malaise had lifted. All the sore bits weren’t sore. I could actually wring out the dishcloth – strength in my hands is returning. I am writing. I had been noticing gradual improvement over the preceding few days, but not wanting to count my chickens before they hatched, I’d been cautious. That cited six month timeframe was still floating before my eyes!

I still have swelling in various spots I can see and no doubt in spots I can’t see. I can’t see inside my shoulders, for example. I can see swelling in my hands still and there is fluid pooled under the skin on the top of my feet (like a bubble on both feet). The ankles are still swollen, but better than they were. I hope I’m safe to say we now have improvement: long may it continue!

So there you have it: just ONE example of how changing medications may not be as simple as just opening a new bottle of pills. If you or someone in your life is changing medications, please be gentle. Be understanding. Be aware it may NOT be smooth sailing. This has been an eleven week journey to just get SOME improvement from Med N. How fast improvement will continue, I cannot say.

Please note I have NOT addressed the question of adverse reactions to a new medication in this article, which is something to be aware of, of course. I’ve stuck to the topic of the process of change without adverse reactions. I have had an adverse event in the past, “When Medication Messes With Your Mind“.

* Med N was showing it was working on skin and nails though – so something was happening.

Robyn Dunphy10 Comments

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