Movement! Exercise! Weights! Health!

Over the last few weeks, I have noticed a few articles in various media about the general health benefits of weight training. All regular readers know I am a strong supporter (OK, advocate) of weight training for ALL adult age groups including my own and older.

The first I noticed was “How Your Muscles Affect Your Mental Health

Muscles at work secrete tiny chemical messengers called myokines that exert powerful effects on organ function, including brain function.

Early 2018 I wrote about the importance of mental health especially when managing chronic conditions. Now it seems with resistance (weight) training, we can kill two birds with one stone! Help ourselves physically and mentally at the same time. This is very encouraging.

I’m on the Pacing UP journey at the moment. My personal best on the leg press in 160 kgs (back in 2018). I did 90 kgs today, will do 100 kgs on Saturday. No, I may not get back to the 160 kgs, but it can’t hurt to try! Plus it makes me feel better!

I’m careful though. I’m asking the gym staff to put the 20 or 25 kg weights on the leg press for me as my wrists don’t like lifting those weights onto the leg press – at the moment. Don’t be afraid to ask for help.

Then The Guardian published “Exercise with weights linked to lower risk of early death, study says“.

Adults who reported meeting the aerobic activity guidelines and weightlifting at least one or two times every week were found to have a 41% to 47% lower risk of premature death.

While many chronically ill patients are younger than I, I am in the older demographic. While I LOVE lifting weights, I do find it challenging to encourage others my age to do so. Hopefully research such as the above will help! For the record, I do weight sessions three times a week, roughly 30 minutes each time. The weights don’t have to be huge! The above photo has small weights, ankle weights, a hand weight for walking with and a resistance Thera band.

JAMA recently published “Association of Dual Decline in Cognition and Gait Speed With Risk of Dementia in Older Adults

In this cohort study of 16 855 relatively healthy older people in Australia and the US, a dual decline in gait and cognitive function compared with nondecliners was significantly associated with increased risk of dementia. This risk was highest in those with both gait and memory decline.

No, the above article doesn’t look at weight training, but it is about movement and exercise and staying physically “on point” if we can. Something I am aiming for personally is to get back to my old walking pace of 6 kms per hour. Now, my GP kinda rolls her eyes at me given my total knee replacement, bi-lateral foot surgery, psoriatic arthritis and age. She could have left the age bit off, but she didn’t.

I’m just not quite there yet. I can do that pace, but not for long enough. Yet. Having goals is something to strive for though – while I accept I may not get back there, that doesn’t mean I should give up!

Exercise generally and the relationship to the onset of dementia is of course a big part of the study I am currently participating in. The study is still recruiting, so if you meet the criteria and are interested, contact them!

This following article I do find a little worrying, given I am, technically, a complex comorbid patient. I have edited this article of mine to add this reference, as I forgot yesterday. I am far from infallible! The article is “Two or more chronic health problems in middle age ‘doubles dementia risk’.

After adjusting for factors such as socioeconomic status, diet and lifestyle, having two or more conditions aged 55 pushed up the risk of dementia almost 2.5 times compared with people who had none. Developing two or more conditions between 60 and 65 was associated with a 1.5-fold higher risk.

Retirement is working for me! Well, not being retired per se, but having the time to do more Movement As Medicine stuff WITHOUT draining my internal battery is working for me. I’ve upped my daily step goal to 7,500 every day. It was 5,500 on my weights and swimming days while I was working, 7,500 the other days. I’ve paced up.

We Don’t All Look Sick! Invisible Illness

Many people who are classified as chronically ill, myself included, don’t look sick or ill. Healthy people can find this a bit of a conundrum. We can be accused of “faking it” or being a hypochondriac. Even worse, we can be criticised for doing the very things we must do to manage our various conditions. With my condition, psoriatic arthritis, I must exercise. This just seems to be a red rag to a bull for the doubters because their understanding of “sick” doesn’t include things like the leg press or lat pull down in the gym!

I wonder how many chronically ill people are actually dissuaded from doing the very things they should do because of this attitude of doubt they encounter from others. That is a study for an enterprising young exercise physiologist and a psychologist to undertake! I’m just posing the question!

In 2018 I wrote “You Look So Healthy!” which was a look at how our emotions can react to being complimented for looking “so good for a sick person”. I also looked at society’s overall acceptance of chronic illness in my more recent article, “Will Society Adapt? When? How?“.

Please be aware not all conditions that MAY be invisible are invisible for everyone. To take psoriatic arthritis as an example, it is invisible in my case SO FAR (and I hope to keep it that way). Other psoriatic arthritis patients will have visible indications of their condition. It may be deformed joints or the need for mobility aids. In fact, psoriatic arthritis is a condition that may wax and wane – so I could be using a walking stick today, but not tomorrow.

People often look for a “gotcha” – and that is very annoying. Having to constantly explain that being chronically ill does NOT mean we have to be in hospital with a cannula in our hand, that yes we can walk 4 kilometres a day but we are still clinically sick is very, very tiring. As I have said before, the reaction I get from the public if I go out with a walking stick is very different to the reaction I get without it. In some respects this is fair enough as without the walking stick there is no indication to anyone that I am not perfectly healthy. However, if I tell someone I need a seat on the tram, I don’t expect to be put through the Spanish Inquisition!

Today I’m looking at the specific question of why, given such a large percentage of the population has one if not more chronic conditions (comorbidity is common), society is not more aware of invisible illness. To use myself as an example, why do people find it difficult to understand that I can do the leg press at the gym, but I can’t clean my shower recess without falling in a heap? For those wondering, it is due to damage in my lumbar spine – which you can’t see. It is invisible.

I sometimes get the strong impression I am not supposed to paint my nails, wear lipstick, or wear my extravagantly floral (happy) leggings. I am supposed to “look unwell”. Why? I think I speak for most of us when I say we go to considerable lengths to NOT look unwell! Doing so makes us happier.

I remember going to my GP once, a while ago now. I was in a flare. My shoulders and wrists were, essentially, unusable. I couldn’t put a bra on (so wore the most bulky windcheater I own to hide the fact). I managed to pull on some tracksuit pants – leggings weren’t happening. Lipstick certainly wasn’t happening. I called a taxi as I didn’t feel safe to drive. “Oh, you are the worst I’ve ever seen you”, she said. True, she had never seen me in such a condition. Had it been my knees or hips or ankles, she would not have seen me in that state: it was only because the joints I use to “look good” were “feeling bad”. Would my GP have recognised how sick I was, though, if I still “looked good”? While only she can answer that, I have been a patient of hers for quite some time now – I think she gets it. But not everyone does.

I would have had NO trouble convincing anyone I was sick that day! But that is not how I want to live my life. It isn’t how I want to look everyday. I don’t want to have to look sick for you to believe I have a chronic condition and trust my requests for certain adjustments.

I don’t want to live my life justifying why I DON’T look like that every day! A friend of mine has MS and he has a card, the size of a credit card, issued by the MS Society confirming his health status. Like me, he doesn’t look ill either, most of the time, to the uninitiated. Maybe a card would be appropriate for more of us.

Above I mentioned walking 4 kilometres. Let me assure you that 4 kilometres is very carefully planned out. I don’t walk out the door and just walk 4 kilometres in one hit. I do hope to pace up to doing that again, but at the moment I’m on the comeback trail. Sometimes, no matter how well we manage our conditions, we have setbacks. We have to pace up again to get back to where we were, provided we can.

I cite myself as having an invisible illness NOW – in ten years it may not be so invisible.

If you are standing in a group of ten randomly selected people, statistically at least four of them will have a chronic condition, maybe more than one chronic condition. There may be absolutely no visible indication. Some readers may have read my rant about public transport – if not, hit that link and read up.

All I ask is don’t assume that a person who looks 100% healthy is actually healthy. Many of the population is not – and we shouldn’t have to explain it every day.

I don’t always win!

I get told many of my audience see me as an inspiration. This is a lovely compliment and I really appreciate it. The recognition actually helps keep me motivated to keep doing movement as medicine to manage my own medical condition/(s).

Having said that, not everything goes according to plan. I think it is appropriate I share the dippy things I do as well as the things that go well!

Today was a dippy day. I had a plan for the day. Around 10 am have two sets of bloods done. For the curious among you, one set was for thyroid function as I recently started Thyroxine. Some years ago I swallowed radioactive iodine and as a consequence, sooner or later I was going to go hypoactive. I was lucky, I got a few years before that happened! The time has come. The second test was to meet the PBS regulatory requirements for the authority necessary to continue a biologic treatment for my psoriatic arthritis.

At 10:30 I had a GP appointment scheduled. Then my plan was off to the gym for weights. Saturday was weights, Sunday was swimming, yesterday (Monday) was an active rest day (walked 4 kms and hit goal of 7,500 steps). So back to weights today. Then I realised that was not a great plan as I was having blood tests – and that means no lifting heavy things afterwards. Hmmmm. OK, compromise, I’ll do just lower body stuff, I thought to myself. Yes, if you are wondering, I wear a mask when doing weights.

Warmed up on the treadmill. Did leg press, leg extensions, back extensions, hamstring curls, single leg push back. Couldn’t do the seated row, of course, or get on the rowing machine. Did not feel as if I’d done enough and wasn’t keen on getting back on the treadmill. Stationary bike? Nuh, not today. The elliptical machines were standing there looking rather unloved so I decided, not having been on an elliptical machine for WELL OVER 10 YEARS (and I was never a fan of them in the first place), I decided I’d just do five minutes to “top up” my workout.

At the 1 minute 30 second mark (this is me we are talking about, I time EVERYTHING for pacing purposes) my quads were telling me they were not at all impressed with this sudden change to their routine. At this point I thought, “OK, three minutes will do this time”.

At two minutes I hit the stop button. Of course, what has happened NOW is I have decided I must pace up on the elliptical machine, haven’t I? I have no desire to become an Olympic candidate by any means, I’ll be happy with five minutes!

After my recent experience with the screwing of 48 screws with a manual screwdriver, where I subsequently needed to resort to Prednisolone (brief, one day only needed – phew) and a wrist brace, I wasn’t about to overdo the elliptical machine (after a more than 10 year sabbatical). I’d learnt my lesson. Now, why I never applied the pacing logic to screwing things, I have no idea. I know better: excitement at building stuff overrode my thought processes! It happens! But really, *rolls eyes at self* I know full well my wrists are involved in my psoriatic arthritis. I have a special mouse, for that very reason!

I also fitted in my second ‘flu vaccine for the year – one of the joys of being immunosuppressed. Just thought I should finish on a positive note!

Never forget to pace.

Movement! Exercise! Mobility!

As we know I retired in order to concentrate on managing my psoriatic arthritis condition. The obvious question is “So how is it going?”

Very well, thank you for asking!

I thought a short update was in order. After all, while I do delve into other chronic illness related topics from time to time, this website IS primarily about #MovementIsMedicine. About pacing activity to maintain or, even better, improve our mobility and reduce pain and the incidence of flares. Avoid the boom/bust cycle so many chronic illness people are familiar with.

As I type it is 9:20 am. I have already walked a kilometre this morning. Yay me! Yesterday I hit the gym for weights – well, at my age and in my condition, resistance training would be a more accurate description. I am not going into the gym and lifting to failure, after all, so I feel a little guilty describing what I do as weight lifting. I am lifting weights though, just smaller ones than in my 40s!

To paint the picture, I had not been to the gym while the Covid-19 Reff was above 0.80. Saturday was my first day back for a while. Yesterday, Tuesday, was my second day. Saturday I took it gently, probably a step back from where I had been before the latest Covid-19 wave. I did the same with swimming on Sunday – a step back.

Tuesday I was pleasantly surprised to discover I had quite an easy improvement in my leg extensions. I increased my bicep curls by a kilogram with no trouble. Very good.

The best part was at the end, when I reached that point I recognised as “That’s enough for today” and stopped the timer. I’d done 27 minutes! Now, to healthy readers who wouldn’t dream of doing less that an hour, let me tell you for me that was a 5 minute improvement over Saturday. Also, please note I superset my workouts. That means I don’t do three sets of a specific exercise with a break in between sets. Supersetting is like this: a set of leg extensions, followed immediately by a set of chest press, then back to the leg extensions, rinse and repeat until the three sets of each are completed. I tend to combine things like lat pulldown and back extensions, tripcep pulldowns and the wood chop.

Benefits of supersetting are more weights done in less time, obviously. Moves the blood around the body by alternating upper body and lower body exercises. I also use the weight machines more than I used to in my pre-psoriatic arthritis days: I find I can keep my technique correct more easily than with free weights. I’m lifting to keep my body working, I don’t need to accidentally injure myself through poor technique.

I’ve set myself some retirement fitness goals:

  1. Weights sessions x 3 a week
  2. Swims/hydrotherapy x 2 a week
  3. Steps per day 7,500
  4. Increase speed to 6 kms per hour

The last one, increase speed, is related to preventing (or delaying) the onset of dementia. There have been studies that suggest slowing walking pace may be an indicator. I have slowed in recent years. I’ve also been participating in a Monash trial, Better Brains. More on this topic another day – just explaining why that goal is there! My GP rolls her eyes at me, given my ortho surgeries (and recovery times involved) and my arthritis – she thinks my pace currently is acceptable. I am not deterred!

I will still drop my step count on the days I do weights – it’s all about the pacing, folks, all about the pacing! No point in doing weights AND 7,500 steps today if I can’t do anything tomorrow.

As for more specific goals, as in swim how far, leg press of how many kilograms, etc: at this point I’m not fussed. as long as I see progress I’ll be happy. Essentially I’ll stick to the pacing principles of 10%, but I’m not going to rush it.

I am definitely seeing retiring was the right decision for my body and my health.

(Edited to correct the cited day! I had Wednesday instead of Tuesday).

Not All Shingles Vaccines Are The Same

I recently discovered not all shingles vaccines are the same. Nor are they equally available in Australia. As I write this, there is talk of changes, but as of right now, it is costing me roughly $600 to be vaccinated against shingles. Why is shingles important to a person with a chronic illness? Because we may be more susceptible, depending on our underlying condition/(s) and our medications. None of us want yet another health issue to deal with.

What is shingles? Essentially, a reactivation of chickenpox. So, you can’t get shingles unless you’ve previously had chickenpox. You can catch chickenpox from someone who has shingles though. Most younger people have been vaccinated against chickenpox, but even my children (now in their forties) had chickenpox before the chickenpox vaccine was available. If you have never had chickenpox and are not vaccinated against chickenpox, get vaccinated!

It is possible to get shingles more than once, so don’t think that if you have already had it you’ll be fine. Talk to your GP.

“But I was vaccinated for free”, you cry. Lucky you. The previous Australian government changed the rules. As it stands at the moment, there is a vaccine, Zostavax, available for free to those aged between 70 and 79. “So just wait until you are 70”, you say? Well, no, that doesn’t work for me either because I can’t have Zostavax. Ever. It contains live virus and because of my medications I cannot have any vaccine that contains live virus. I am not alone, there are many, oh, so many of us. Many medications stipulate the patient must not have live vaccines.

Those under 70 can pay for Zostavax if they want to have it earlier than reaching 70 years of age. The current list price is $192.50 and only one shot is needed. Quite a price variance. But that’s the vaccine a large cohort of the population, of which I am a member, can’t have. There is also, I think (depending how one reads the bureaucratic wording), provision for certain at risk people under 70 to have the free vaccine for free before reaching 70, but the criteria is complicated and I gave up trying to decipher it: talk to your GP!

So where does that leave us? It leaves us paying $281 (cheapest price I’ve found) for each of the required two vials of the Shingrix vaccine. Two shots, between two and six months apart, so $562 for the vaccine. Then there are the GP consultation fees to get the prescriptions, the travel costs to the GP and the pharmacy, possibly another GP fee for the actual injection. For some, it may total more than $600. This vaccine is not (yet) free when we reach 70.

As I can never have the free Zostavax vaccine and once we are over 50 the risk of shingles increases rapidly, I decided to bite the budget bullet and have it now. Stress is also considered a trigger for the onset of shingles and I have been under considerable “life is complicated” stress lately – the last thing I need right now is to be hospitalised with shingles. Shingles can also lead to longer term health problems, such as postherpetic neuralgia (PHN).

Then there is the question of vaccine efficacy. Various numbers are given in various reports, but essentially Shingrix is about twice as effective as Zostavax. This Harvard link cites more than 90% for Shingrix and 51% for Zostavax. The numbers are less for those of us with compromised/suppressed immune systems.

One has to question the logic of using a less effective vaccine when the costs of hospital treatment for shingles and related complications is surely much more expensive that the cost of Shingrix. While I have no doubt chickenpox and shingles will never entirely disappear, it is those of us old enough to have caught chickenpox before a vaccine became available that at risk – so the numbers and therefore the costs reduce over time. I fully support making the more effective vaccine available on the Pharmaceutical Benefits Scheme for those over 50. Talk to your local member of parliament.

As for the photo for this article: some people are squeamish so I didn’t put a photo of the lesions! There is a link below with images for the braver readers!

Information Links you may find useful:

National Immunisation Program Schedule

Shingles (herpes zoster) immunisation service

What Everyone Should Know about the Shingles Vaccine (Shingrix) (CDC)

Shingles: Clinical Overview & Complications (CDC)

Slideshow: A Visual Guide to Shingles

ABC Radio National – Shingles follow-up (podcast with Norman Swan)

Footnote: If you are unlucky enough to develop shingles, there are antiviral treatments, but they must be started within 3 days of the rash developing. Details can be found here. My view is prevention is better than cure.

I Have Retired. Should You?

I’ve been very quiet on Limberation because I’ve been extremely busy. I’ve retired and moved. BIG life change it is too!

My plan was to keep working until I was 70. My body has been saying, “Maybe not”. Not that I am in constant pain, I’m not. And I want to stay that way. Regular readers will have noticed my articles about energy use and pacing. Two very important aspects to managing my condition and retaining my mobility, function and independence.

By April of this year I had reached the point where I was seriously considering how long I could keep working. It seemed I didn’t have enough energy to work AND exercise enough: #MovementIsMedicine. Of course, simply getting older plays a part in this as well and there is not a lot I can do about the passage of time.

When my name came up on the right list for retirement housing (yes, I had been planning ahead, I was on waiting lists) I made the decision. Retirement was the way to go. The decision involved a lot of work though – energy I really was struggling to find. Writing was definitely put on the backburner. Working through phasing me out of my position in a job I love. Organising the actual move – and the move date got moved twice, just to complicate matters. The move also meant downsizing and that was work. I am typing this on my dining table, not my very large corner desk with a return on each side that I used to have! Packing took more energy. To top it off I got a temperature that hung around for six weeks and towards the end of that six weeks, a tooth infection. The temperature involved a lot of blood tests, some CT scans and several doctors visits. More energy needed. We now think the temperature and the tooth were connected, but initially I didn’t have any tooth pain, therefore we didn’t realise.

It wasn’t just me either. My brother-in-law was diagnosed with an aggressive cancer, my nephew needed stents and my daughter and her husband got Covid-19. There was an attempted identity theft/fraud on an account of mine which had to be sorted as well – I caught it as it was happening, so no losses. Everything was happening at once.

Back to why I retired. I used to be able to walk before work, walk at lunch time and walk after work. I was struggling to find the energy to get dressed before work, let alone walk before work. This wasn’t good for the management of my psoriatic arthritis. I wasn’t being consistent in my exercise either. My weight training had dropped to once a week – I was not happy about that. As a result I was experiencing an increasing number of minor flares and I didn’t want any major flares! I had already cut my working hours from 30 hours per week to 24 hours per week, but the days I worked I was still struggling to do the movement I need, therefore I was losing the consistency.

It seemed if I did the exercise and physical therapy I need to do, I was too tired to work, and if I worked, I was too tired to maintain my exercise regime. Maintaining my health as best as I possibly can is critical to quality of life. I love working, but it reached the point where I could no longer have my cake and eat it too.

Should those of us with chronic conditions make this decision earlier if we can? It is a huge decision. There are the financial implications of course. There may be housing implications as well. The age pension age keeps getting further and further away……. The disability pension (for younger patients) is almost unattainable these days. Women around my age may not have a lot of super (if any) due to the particular decades we worked through, there was no paid maternity leave for many of us and so on.

Yet more and more of the population live with chronic conditions of some sort. We have to make hard decisions about how we manage our lives. I became eligible for the age pension the year before I finally bit the bullet and retired. I am still working as a casual for my employer but minimal hours.

I believe I have made the right decision for my health. Without health, other aspects of our life may suffer: relationships, work, mental health to name just three. Do we try to “keep going” too long, or longer than we should? I’m thinking not just of now, but in ten years time. I want to give myself the best chance of minimising deterioration NOW so I can maintain quality of life in my seventies and eighties. We need to look ahead, not just at tomorrow or next week. Our modern medications, as fantastic as they are, don’t solve everything.

What am I going to do with all this “spare” time? Naturally, I’ve set myself some physical goals: swimming, weight training, walking goals. I will pace up to those goals. Find more unusual flowers!

I will write more. I will get back to my parking permit project. I will finish unpacking, cull my shoe collection.

Paint my nails! Of course!

This first week of full retirement has been psychologically challenging. I hadn’t had time to really prepare myself for the change of lifestyle and then there it was, happening. My advice would be if you can plan ahead, do so.

So that is it. I am retired. A different phase of life.

Bring it on!

I Was Wrong

Not so much wrong as misinformed. I was told/lead to believe the Double Time parking permits were new – or newish. Nothing I read or looked at in my researching of the issue told me otherwise. I am not a professional in this area, just a person with a chronic illness trying to navigate my way through the system. I took the word of the people I communicated with. One conversation in particular I look at now and can see there must have been miscommunication on both sides, but at the time I understood it as confirmation of my understanding. Such is life, we move on. New permit or not, my view as to the suitability HAS NOT CHANGED.

How did I find out I was wrong?

As readers know, I lodged a Freedom of Information request. I have received a response advising my FOI request is not valid.

You are making a request under the Freedom of Information Act 1982 (Vic) (FOI Act), however at this time your request is not valid under section 17 of the FOI Act because it is not clear and specific enough for us to identify the documents you have requested.

The letter I have received goes on to say:

At this time, your request is not sufficiently clear because your correspondence refers to introduction of a new accessible parking permit, the Double Time DT permit in Victoria.


Preliminary advice from the program area indicates that the Double Time Parking Permit is not new and was part of the original Disability Parking Permit Scheme in Victoria.

While I have no reason to doubt the above advice, that does not change ANY of my arguments for change and/or innovation. The Double Time permit is not suitable for many people with chronic illnesses, as outlined in my previous articles on the topic:

I am not at all sure what my next steps will be. I will lodge a new FOI request, however based on the content of the letter I have received, I may not be able to provide sufficient detail to meet the requirements of the FOI Act.

The battle continues.

Accessible Parking Permits – Part II

This is an update to my Open Letter to VicRoads article. I will say the VicRoads staff member I spoke to was professional and very helpful – as helpful as is possible under the prevailing circumstances. In a nutshell, both my doctor and I may have taken the wording of one of the questions too literally and I can (and will) apply for a review – whether that will be successful remains to be seen and involves seeing a different doctor than the first one I saw, so another medical bill. HOWEVER, while that may solve my specific, immediate problem, it does NOT solve the broader issue of many of us needing parking proximity. I reiterate, the DT (Double Time) permits are not accepted in other states, unlike the Australian Disability Parking (ADP) Permit which is recognised nationally as it is a federal scheme.

I’ve mentioned the wonderful Dylan Alcott before, in Society and Chronic Health Conditions. I am going to compare Dylan and myself. Dylan VISIBLY needs an ADP Permit, no question. He needs the extra space for his wheelchair, this is obvious to anyone. However, anyone looking at me is going to assume I am “healthy” – the problem of invisible illnesses is we keep having to justify why we look so healthy.

The issue here is energy. Again, compare Dylan and myself. Dylan has enough energy to play professional tennis at the elite level. I’m not saying that is easy, but he has that energy! As I described in Personal Energy Use, many of us have to manage our energy use down to the last joule on a daily basis. This can be particularly challenging when we MUST also do certain levels of physical activity (movement is medicine) to retain function and mobility. If Dylan had to park 500 metres from his destination, I can imagine him covering that 500 metres with the acceleration he uses on the tennis court. I could also cover 500 metres very well – IF it was one of the ONLY activities I had to expend energy on that day, or I knew about it before hand and was able to plan accordingly. But it isn’t, is it? Life’s not like that. I talk about energy because that is my issue, but many other people would risk pain being triggered by unplanned extra activity. Pain that may take 48 hours or more to settle.

We are not only an aging population, we also have increasing numbers of chronically ill people in the community, many trying to live independent lives. We work. We go to the gym. We swim. We do hydrotherapy. We go to shopping centres. We study at universities. BUT WE HAVE LIMITATIONS.

While VicRoads manage the applications for accessible parking permits and determine the application questions and categorisations, they are NOT responsible for the number of available parking spaces OR the TYPES of parking spaces. Councils are responsible for the actual parking spaces themselves. It seems councils are reluctant to provide more wide style accessible parking spaces. My suggestion is we need a second type: standard width parking spaces close to entrances (as the wide spaces are) to provide a proximity benefit to permit holders. These would require no structural modifications, just appropriate signage.

The Double Time (DT) parking permit that I now have is useless to me. I don’t need double time, I need proximity. I’m not going to spend double time in the gym, for example. What I do need is to not have to walk an unplanned extra 600 metres (300 metres being the distance I had to park from the gym the other day) as part of my excursion. And that’s the problem, we can’t plan our day if there is this great unknown of how much extra walking will be required. Do I cancel my morning walk, just in case? But then I can’t “catch up” that walk later in the day either if I find I don’t need that extra energy supply by finding a park close to the gym. That is not taking into account carrying anything either (gym equipment, shopping, text books, whatever). Activity has to be spaced out across the day for many of us. We may need rest between sessions.

On Monday last week I had a big day, for my body. It went like this: walk to tram, tram to train, walk from train to dentist, repeat in reverse, slight rest, drive to myotherapist, then home afterwards. Monday is usually a gym day as I don’t work Mondays, but after all that activity I was energy depleted: gym was not happening. So I planned to go to gym after work on Tuesday if I felt up to it. Tuesday, drove to the gym, not a park within any reasonable distance. I had to turn around and drive home again. The double time permit was of no use to me at all.

Then comes the question of who fights for change? Change usually has to be driven by those needing the change, but our energy levels won’t allow for taking on that extra load. Another illustration. Yesterday (Friday) was a reasonably heavy day of work for me, I was flying solo as colleagues had the day off. By about 5 pm I was 700 steps short for my daily step count target. I bribed myself to do those 700 steps by walking to the local shop and buying a treat.

Bad me! But they are nice.

By 7:30 pm my internal battery was completely flat. Lying in bed, I realised I hadn’t done my critical shoulder exercises but there was no way I could lift myself off the mattress to stand up and do them. I didn’t make my breakfast last night in preparation for today. This morning I realised I hadn’t even removed my “paint on” (doesn’t smudge under masks) lipstick last night. This morning it was noon before I could “do stuff”. Saturday morning is always “recover from the working week” time, and at least I did manage to paint my nails, so the time wasn’t completely wasted.

My FAVOURITE colour!

Where on earth would I find the energy to launch and drive innovation across the many councils? The truth is, I don’t have that energy available. It would be very hard work. The very people who need the innovation may not have the energy to fight for the innovation. Therein lies our problem. This whole situation, of course links back into my article Will Society Adapt? When? How?

Expansion and innovation of accessible parking availability is part of the social adaptation required for the increasing numbers of people.

The need to recognise different types of disability is paramount. Dylan and I have completely different disabilities requiring different solutions. We need to innovate.

I am told there are problems with people who perhaps really do not need accessible parking getting access and therefore there has had to be a tightening of eligibility criteria. Yet this flies in the face of the knowledge we have about the increasing numbers of people in society who may need accessible parking to retain their independence and quality of life. The solution to increased numbers of people is surely not to restrict access, but to innovate and increase availability, perhaps provide a new type of parking space as I’ve suggested. Other suggestions I am sure would be made if we thought about it.

It seems to me society is saying we can’t possibly make more or different spaces available for the increased number of people, we’ll just have to restrict access more rigorously. That’s like saying we can’t build more schools, we’ll just not educate some kids. Or we can’t have more hospitals, some sick people will just have to miss out on treatment.

Of course, if I were rich, I could have a chauffeur drive me to the door of my destination, find a park and wait for me. Like a great many of the population, I’m not rich.

chronic conditions care courage consistency coaching

Use It (Consistently), or Lose It

Modern medicines do many things. Some cure conditions. Many do not (yet) cure, but help in other ways: medications may slow disease progression or manage condition expression (e.g. control/reduce inflammation).

Medication alone is not a silver bullet – it often isn’t enough on its own to retain or regain functional movement and quality of life.

I’m going to share my own practical experience as an illustration. Shoulders are only the example here – the concept is the important bit. Interestingly I had a conversation with my eighty-something year old neighbour this morning who concurs! He told me he has FINALLY learnt to do his rehabilitation exercises religiously, every day. But Jack (not his real name) no longer works: this is where my consistency can suffer!

As per my earlier article, I Sat in My Car and I Cried, 2021 was a bad year for me. I went through a period where everything hurt. Consequently, as I was battling so many bits of my body, my shoulder care slipped. That’s on me, my fault.

My shoulders had first played up in 2016 and with the help of a great physiotherapist and lots of CONSISTENT exercises I’d rehabilitated them. With my usual swimming and weight training, the shoulders had stayed good without the need for specific exercises daily. However, during 2021 because the rest of my body went into meltdown, I was limited in my swimming and weight training. The shoulders progressively worsened to the point I had an ultrasound-guided steroid shot in each shoulder in late October 2021. There was at the time fluid in both shoulders. Not good. I should mention at this point the shoulders may not be exclusively psoriatic arthritis, there is likely some osteoarthritis going on in there too, plus the constant irritation of mouse and keyboard work. Yes, I have a fantastic vertical mouse, but that is more for the wrist than the shoulder. The right shoulder (mouse shoulder) is worse than the left.

It wasn’t until after my new medication started working in January 2022 that I was capable of being consistent with my exercises again. But how consistent was I being? As it turns out, not very.

The last couple of weeks are good examples. Saturday I head to the gym and yes, my shoulders hurt for the first couple of reps, but I do the usual upper body routine: lat pull-downs, chest press, seated row, bicep curls etc. By the time I leave the gym I have no shoulder pain. Movement Is Medicine (point 3 in that article). Sunday I head off to the hydrotherapy pool and do more gentle exercises, some involving the shoulders. As of last week I’ve added a few swimming laps (slowly increasing as shoulders toughen up). Monday, back to the gym, but less upper body work as I did the workout on Saturday. By Monday afternoon, my shoulders are singing!

Then comes Tuesday. My first work day of the week. I’m busy. I make sure I get my step count in. No gym today. My shoulders, feeling fine, do not remind me to do my rehab exercises and I slip. Bad me.

Wednesday I might feel a twinge or two when I get up and think to myself, “Robyn, make sure you do your exercises today, you know what happened last week!” Do I? Maybe, maybe not. Depends how exhausted I am at the end of the work day. Note to self: do them before breakfast, you idiot.

By Friday I’m back where I started, with sore shoulders. Again, I kick myself (figuratively speaking).

According to my myotherapist, I am pronating my shoulders. Not surprising as a desk jockey, we have to be so careful and it gets harder as we get older. To counteract the pronation, I bought myself a PostureMedic which I wear under my clothes, not over as shown on the marketing materials! Ran it past my myotherapist for his approval. I don’t wear it all the time, as while it encourages the wearer to hold their shoulders correctly, wearing it isn’t strengthening the muscles required to hold the shoulders in position naturally. I use it as a prevention tool as I first start work to help me develop/maintain correct sitting posture at the desk when I am deeply engrossed in work and can forget about my body.

If you have ever had your shoulders taped by a physiotherapist, it is a bit like that, but something you can put on and take off yourself without the issue of wet tape on your back after a shower!

My goal this week is to be CONSISTENT! To follow my own advice to other people! To do my exercises every day and not lose the gains I make over Saturday, Sunday, Monday.

Modern medications are fantastic, but they don’t do everything. Often, there is no way of medications repairing past damage, for example. If there were, I wouldn’t have needed a total knee replacement! I need to take the time and put in the effort to get my shoulder muscles working properly again. Yes, age is also a factor. In three months I will be three years away from three score and ten – what used to be considered the nominal span of a human life.

I hope by sharing my failures at being CONSISTENT I may have encouraged you to be more consistent than I have managed recently.

Movement IS Medicine.

Open Letter to VicRoads

I sent the email below to VicRoads on Monday March 7, 2022. As of today, I have not received a response. Some patient experience in the meantime. On Saturday I went to the gym. The closest park I could get was 300 metres from the gym. This was a suburban gym, not a large shopping centre as cited in the email below. That meant I had to cut my rehab work time short to allow for the extra energy required to walk an unplanned extra 600 metres (total). On the Sunday I went to the same location for hydrotherapy. Hydrotherapy means I am lugging an equipment bag and a swim bag. I knew if I was going to have to park as far away again, I would have to skip my hydrotherapy. Thankfully, I was able to get a park across the road. Even so, once I had finished my workout I had to sit and rest for ten minutes before walking back to my car. Energy.

I believe a week is sufficient time to allow for a response. When I do receive a response, I will do a follow-up article. This issue is going to be very important for many chronically ill people.

Dear VicRoads,

I recently renewed my accessible parking permit. This is the first time I have been through the VicRoads application/renewal process as in 2021 I renewed via City of Stonnington.

I had a total knee replacement in 2020 and bi-lateral foot surgery in 2021. Those are not the reasons for my concern. My concern relates to my chronic condition, psoriatic arthritis. As with many chronic conditions lethargy and fatigue are symptoms. A DT Permit is of very little benefit to me and the many patients like me. I hope that the decision makers and policy makers within VicRoads are aware of the prevalence of lethargy and fatigue. If not, there are many peer reviewed clinical reports I can refer to your organisation for their edification.

You may have heard of the spoon theory analogy. Personally I prefer the internal battery analogy. Most chronic illness patients have limited battery charge per day. I refer you to my own writing, “Personal Energy Use” for a deeper explanation.

The DT Permit provides no proximity benefit to the permit holder. For example, in a large shopping centre or university carpark I might have to walk a kilometre just to access the shops or lecture theatres and return to my car. That doesn’t take into account any walking required within the shopping centre or on the campus. Large hospitals could require similar. I know, because I’ve measured the distances.

For a person with a chronic condition, this extra energy use may prevent us being able to shop, receive health care or undertake education. Alternatively, it may leave us so depleted of energy we are unable to undertake the activities that are required to manage our condition on a daily basis or to perform our jobs effectively. I currently work from home, however when required to go into the office, in a very large organisation, getting a car park near a lift can be extremely challenging unless I have an ADP Permit.

Surely it would not be difficult to mark some standard width carparks within a reasonable proximity to appropriate entrances to the facilities in question.

The DT Permits do not allow for changing circumstances either. For example, psoriatic arthritis is notoriously unpredictable. While I’m not using any mobility aids at the moment due to a recent change in medication, two months ago I couldn’t get out of bed without using crutches. I am facing a second total knee replacement and two ankle replacement surgeries in the future. The ankle replacements require twelve weeks each of non-weight bearing on the operated leg (a knee scooter allows mobility). Obviously while on a knee scooter I will require one of the wider car spaces (no, I will not be driving myself). I understand temporary ADP Permits can be obtained for surgical reasons, yet this does not change the underlying issues of the DT Permits nor allow for unpredictable conditions.

The VicRoads website restricts the ADP Permit to issues with walking less than 100 metres: “you have an acute or chronic medical condition such that minimal walking (up to 100 metres) causes you to stop several times because of pain, extreme fatigue or imbalance which may endanger your health acutely in the long term“.

This is unrealistic for the reasons I have stated above. It isn’t the 100 metres that will be the issue for many of us, it is the energy expended walking the considerable distances given there is no proximity benefit with an DT Permit that may cause extreme fatigue which may endanger our health in the long term and impact our current quality of life in other ways as stated above.

I hope that VicRoads will give serious consideration to the requirements. My permits (expired and current) are attached for your reference.

I will be publishing this letter on my website in order to support the disability community but will await your response.

Kind regards

Addendum: For those wondering, yes, there are differences between states. There is an Australian Disability Parking Scheme, details of which can be found on that link. Note that the DT permit is NOT part of the federal scheme and therefore is not accepted in other states.

Update March 26, 2022 Please refer to Accessible Parking Permits – Part II for an update.