Choosing Your Doctor/(s)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

leg press

I Am Angry

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

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

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

The Australians still putting their lives on hold to avoid Covid

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

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

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

I mitigate risk as much as I can:

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

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

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

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

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

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

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

Yes, I am clinically a vulnerable person.

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

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

If you have questions, ask those questions.

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

We All Get Those Weeks

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

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

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

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

Specific grabs from the paperwork

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

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

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

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

I took Sunday as an active rest day.

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

My coffee mug!

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

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

I’m masked for public transport!

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

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

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

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

After my workout

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

My walking flowers

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

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

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

“How Can I Afford to Exercise?”

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

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

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

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

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

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

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

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

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

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

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

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

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

Central Park
Fitness Equipment – free in the park

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

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

Compare the months

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

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

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

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

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

Hydrotherapy equipment drying after use

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

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

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

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

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

Now to the WHEN!

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

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

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

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

Adjusting Our Goals

When we use Movement As Medicine, we need to set goals: SMART goals. If you are new to the concept of SMART goals, click on this link “Make 2018 Your Year for SMART Goals” and catch up!

My current general goals are:

  • 7,500 steps a day, including active rest days
  • Weight training Tuesday, Thursday & Saturday
  • Swimming Wednesday & Sunday

I say general goals because within each of those, there are more specific goals, e.g. improve my walking pace to 10 minutes per kilometre, increase my leg press weight to 110 kilograms, swim 1,000 metres in a session.

Today is Sunday. I did not swim today. I adjusted my goals due to my condition requirements. Or, to put it another way, I was happy decided to miss that swim goal today. Sometimes we have to. Everything has been going swimmingly (pun intended) however on Friday I did something unusual: unusual for my body, that is. I scrubbed dirt off a window cavity frame well above my head. In fact I was on a stepladder. Yes, I do shoulder presses at the gym, but that is a very controlled action. Scrubbing stuff is not such a controlled action. Oh, I inherited the dirt, I didn’t create it! Just in case you wondered.

As is typical for my joints, two days later (today) the joint I may have overloaded while living life is complaining. The same two day lead time happened with my wrist recently when I used a manual screwdriver to screw 48 screws while building two bedside drawer units.

Lots of screws!

In that particular case, Friday being an active rest day, my grumpy wrist didn’t upset my walking – however on the Saturday I did drop my bicep curl weight. My wrist has to hold the weight. Often we can adjust activity to ensure we are operating in a pain-free range. We can walk for less time or at a slower speed, but do more walks on the day, for example if it is knees, hips, feet or back that is grumpy. I can temporarily lower a weight, as I did with the bicep curl, to ensure I don’t aggravate any inflammation. In that case, inflammation I had caused by doing too much twisting of the wrist.

Swimming is not such an adjustable activity. I can’t do half a stroke. I can’t reduce the range of motion of my arm to swim within a pain-free range. I’d sink and that is not a good look.

I pulled out my hydrotherapy equipment and did 30 minutes of exercise in the hydrotherapy pool. The top picture is my carefully rinsed equipment drying. From the left:

  • Push bells which I also use as dumbbells. I got these instead of aqua dumbbells as I don’t have to grip them, they strap onto my hand.
  • Pillow. I use this in the corner of the pool when I do certain leg exercises. Purely for comfort.
  • The bag I carry the equipment in.
  • Aqua cuffs for the ankles – this particular type is no longer available, it seems.

I bought these from theraquatics.com.au some time ago if you are interested in getting any equipment yourself. Theraquatics are a registered NDIS provider.

The ankle cuffs have extension pieces, therefore the two can be joined to make (for example) a waist “cuff”.

Setting goals is important. Just as important, when we are managing chronic conditions, is the ability to say to one’s self, “It is OK to adapt today”. That can be difficult for some of us. For example, I find it VERY difficult, let’s say impossible, to end a planned 2 kilometre walk at 1.93 kilometres. I’ll walk to the clothesline and back to get that final 70 meters! I like round numbers, I’m an accountant! What can I say?

Yet I knew when I was making my breakfast this morning that my right shoulder was not happy. I knew that swimming would quite likely exacerbate the situation. Then I’d need to take Prednisolone to settle it down. So I did the sensible thing. Gritted my teeth and let my swimming goal slide for the day. I replaced it with an alternative activity. One where I could easily control my range of motion.

Am I annoyed? Yes. Of course I am. At the same time I am also pleased with myself for being sensible!

Goals are good. Adjusting goals is sometimes necessary and also good. Even for stubborn people!

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).

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.