Movement As Medicine

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

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

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

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

Information re medication

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

The current list of sore bits?

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

I think I’ve listed everything.

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

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

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

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

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

Walk

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

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

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

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

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

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

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

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

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

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

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

Taregts

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

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

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

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

Movement As Medicine

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

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

Robyn Dunphy7 Comments

Let’s Talk About Teeth

This is a follow-on from my previous article, where I detailed spending too much time in ED with rather nasty PsA flares. As detailed, the consensus in the end was I had an infected tooth and that was driving my flares.

The offending tooth has now been removed! The improvement in my overall health is nothing short of remarkable.

I have had NO major PsA flares since the tooth was extracted. I have not needed Panadol Osteo or Tramadol and have tapered off the Prednisolone. Yay!

I haven’t had a painful wrist, painful or swollen fingers, painful toes or ankles since the extraction. When I say painful in this context, I do not mean excruciating, I just mean sore, irritating or annoying. These are distinct from from full on flares, such as when I couldn’t cut the cheese as the wrist was too painful. I had been experiencing these niggles off and on since starting my new PsA medication, but had actually put it down to the new medication not being as efficacious as the previous medication. I am revisiting that assumption!

The tooth was extracted on November 21. I have delayed writing this update as I wanted conclusive proof of a couple of seemingly related improvements, however I think it may take a month or more for that, so we’ll see what happens.

In a nutshell, it seems I may have had an infected tooth for most of this year, without realising. One aspect of this saga I didn’t mention in my previous article is I have some (not all) broken or wonky pain sensors. This was initially suggested by the Barbara Walker Pain Management Centre when I did a pain management program there. There are situations where it seems every other patient known experiences pain, but I did not. I’ll cite one example here to illustrate. I have had my gall bladder removed, yet during the whole process of trying to find out what the problem was, I had NO pain. Just dizziness and nausea and felt unwell. Finally scans were done and bingo, there was a porcelain gallbladder. The surgeon’s words, on reviewing the imagining, were “That needs to come out. Now”.

We’ve decided anything muscle or joint related, I feel pain. Things like gallbladders, teeth etc – not until the very last minute, if at all.

It seems it went like this. Some time before April, the tooth became a minor problem and steadily got worse until by May/June I had developed the ongoing fever. The tooth I had issues with in June may have only had issues because the infection from this tooth had spread, upsetting a nerve. The June tooth seems fine now! Antibiotics at the time settled things down for a while, but it resurfaced. As I mentioned in the last article, this tooth is one that my partial plate clicks onto. There were times the tooth felt uncomfortable this year, but it was off and on and I wouldn’t call it pain as such, just uncomfortable. I thought it was probably just the load of the plate putting stress on the tooth, I never considered infection. Not until the very last days before I ended up in ED. By then I did actually have a toothache! Even so, it wasn’t an excruciating toothache.

Now, during this year I also lost high frequency hearing (yes, confirmed by the audiologist), lost my sense of smell and my nose was swelling internally every night, waking me up as my breathing was disrupted.

For two days after the tooth was extracted, my sinuses continuously drained down the back of my throat. Two days after having my tooth out, I walked outside after it had been raining. I could smell wet earth! Hmmmm, I thought to myself, if my sense of smell will recover, what about my hearing? After all, I had experienced a VERY mild earache during the worst of what I now refer to as “the ED weekend”. The best home test of that is taking my temperature as the high frequency alert beeps are in the frequency I can’t hear. I have been able to hear them a few times since the tooth extraction, but not every time. While I could smell the wet earth, sticking my nose in a rose is no different than it was before – yet anyway. If I walk past certain plants on my walks, I can smell a scent in the air though. I can smell cinnamon again. So while there are changes, I don’t yet have conclusive proof either my hearing or my sense of smell will return to normal. The changes to date (less that two weeks) are interesting though.

The nose swelling is still an issue, but improving. My gut is also settling, although attributing that to the tooth is complicated by the fact we also increased my Thyroxine dose at about the same time as having the tooth extracted.

Upsettingly, due to my drop in activity over this time, Garmin has kindly reassessed my Fitness Age – and not in a positive direction! I am not above admitting that at my age and with my medical conditions, I was quite proud of the fact my Fitness Age was younger than my chronological age. My objective now is to pace back up to where I was!

The bottom line here is teeth are SUCH a vital component of our health. Yes, those of us with chronic conditions are likely more susceptible to complications due to our underlying conditions and/or our medications. Even so, healthy people are also at risk. My personal situation is complicated by the pain sensor thing: clearly if I’d had a toothache earlier and reported that, I might have avoided much of what ensued!

It has certainly been an interesting experience!

Robyn Dunphy5 Comments

The Tangled Web of Chronic Illness

Recently I described a less than optimal week which had included a fancy nuclear med stress test of my heart. This week, which is not yet over, has been another WTF? week in the life of this chronic illness patient. I’m sharing for several reasons:

  • For friends, family & co-workers of other chronic illness patients, to show “what happens”, enhance understanding
  • To highlight the complexity involved and why GPs are so important in our health management (wary of the NSW pharmacist prescribing proposal in cases like mine)
  • To illustrate the October and November episodes may well be related to each other – and to a tooth
  • Dental care needs to be included in Medicare

This article assumes the reader is not new to my writing – if you are, click on the included links for the backstory. One piece of information that may be missing from linked articles is back in May/June of this year I had a fever for six weeks. Continuously. No idea why at the time. Bloods, CT scans, nothing indicated why I had a temperature. Did the merry-go-round of my treating specialists: GP -> gastroenterologist -> rheumatologist -> endocrinologist. Then out of the blue I got a very sore tooth. Dentist prescribed antibiotics, temperature disappeared. I don’t know about you, but I suspect I had a painless tooth infection for six weeks. Just tuck this paragraph in your memory banks for later in today’s story.

So we roll forward to November 10. I had a painful tooth – different tooth this time. I also had flaring hands from the psoriatic arthritis. Skin was flaring on the left arm. I stopped wearing my partial plate as it “clicks” onto the painful tooth, I hit the Osteo Panadol. November 11 (Friday) I woke to the flare worsening. I needed pain relief. I took Osteo Panadol, Tramadol and Prednisolone (as per previously established protocols). I also took my temperature. Low grade, 37.4 (but given at my age my normal temperature is about 36.6, it was a little higher than I’d like). Me being me, I thought if this is no better tomorrow, I’ll call my GP. Good plan, right? Not all plans go according to plan.

Late in the day, I developed a rather nasty pain under my left scapula. I pulled out the foam roller, that’ll fix it! No, that didn’t work. Spikey ball? Minor relief. Massage ball? Also, technically, a fail in this case. Sticking to my plan of call GP tomorrow, I gave up on curing the pain, took pain relief and went to bed. In the middle of the night I woke up, as one does, to go to the toilet. Just one minor problem: I couldn’t lift myself up from the supine position without the pain under my left scapula wiping me out. I spent some time figuring out how to use my right side to get myself out of bed without contracting any muscles on the left. Yay! I’m standing! Woo hoo! Phew! Did what needed to be done and had the same issue laying back down. But I’d figured out what movement I could and couldn’t do, so I managed.

When morning came, no improvement, same problems. Called GP clinic, the advice was go to ED. So I did. One aspect that amazed me was this: despite the pain in trying to sit up or lay down, I could do my bra up with no problem. Our bodies are weird or amazing, depending on your perspective. Which ED to go to? The private hospital ED would cost me $480 out-of-pocket as the safety net threshold only applies to out-of-hospital charges! I decided the public hospital ED fitted my budget better. I trammed to ED. Mentioned to attending doctor about the tooth. I suggested maybe I have a tooth infection that is driving a PsA flare. Doctor looked at tooth and was very concerned about how loose it (now) was. This was considered a very likely scenario. Plan of action was I would go to dentist on Monday to see about tooth. ED gave me five Palexia to get me through to Monday if needed. I went home. By then the shoulder was miraculously perfectly fine. I rested, as I figure that was probably a sensible approach to the situation. I could almost hear my GP saying, “Just rest!”

By Sunday, I was going stir crazy from resting. It is, as we know, not really my style. I decided a one kilometre walk around the block was needed. As I walked, I felt a twinge in my right hip flexor. Uh oh. I also felt a little dizzy and had to lean against a fence for a few seconds. Flash back to my October event right there. It is a very minor twinge, nothing even remotely severe, I figured it would pass, just my body being flary given the tooth infection. Looking back on my notes though, my temp that morning had been 39.1 and I’d woken in a freezing/boiling cycle with a sore hip. Had forgotten all about the hip until I revisited my notes just now. Notes are kept for my GP, symptom diary. Useful, by the way, as we forget things. How did I forget I’d woken with a sore hip that morning? Obviously it didn’t last long, replaced by the hip flexor specifically, later in the day.

I was hopeful, wasn’t I? 2 am Monday I woke up to go to the toilet. I couldn’t move my right leg due to the pain. I lifted my leg off the bed with my arms so I didn’t have to contract leg muscles, grabbed the walking stick that lives beside the bed for just such events and got myself to the bathroom and back. Now, half of me was saying, “this is just another flare” and the other half of me was asking “but what if it isn’t?”. I already know from my October event that if I called Nurse On Call, given my history, they will call an ambulance. I figure I might as well save the time and call them myself. We decided I was not P1 (very reasonable), so I was allocated to the queue. While in the queue I had to somehow get to the front door to unlock it. While I didn’t time that journey, it felt like half an hour and I had to rest on the couch before heading back to bed. And find a nightdress. Ambos don’t need naked patients. And the recording had said have a mask on.

Ambos arrived and decided to do Virtual Emergency Department. That doctor advised “take the patient to ED”. So that’s what happened. I got my first try of the “green whistle”, that was exciting! Hey, we have to look for the positives and innovations are positives! It was pouring rain as I got in the ambulance, we all got wet.

Kind of a rinse and repeat of Saturday with a few extras thrown in: x-ray of leg/hip, x-ray of teeth, antibiotics prescribed. I called my dentist from ED, but dentist was closed. Thankfully, dentist called back and booked me in for Tuesday. CRP had jumped from 28 on Saturday to 85 on Monday. ESR was now 61. Definitely something going on. Tooth again got the blame. Has this happened before, I was asked. Actually, aside from Saturday, yes, it has. October 25 my wrist was so sore I couldn’t even cut cheese. November 04 my hands had been swollen and sore, but I’d put that down to a reaction to my second Shingrix vaccine. November 25 I had woken with an extremely painful left leg (probably ITB). All these things had resolved within 24 hours though. Suggestion is made that perhaps I’ve had a low grade tooth infection for a few weeks but as I didn’t have pain in the tooth, I didn’t realise.

That’s when I first thought back to my October event. Now, as luck would have it, I had a gastroenterologist appointment for Monday afternoon. From ED I called to reschedule. That appointment happened yesterday. My first question to her was “Can a tooth infection upset the gut?” Yes, was the answer. Her advice, on hearing the story, is we get the tooth sorted first, manage the gut in the meantime, then reassess. After all, the gut was determined to be the cause of my October event, but now we are considering the tooth was causing the gut to misbehave.

Am I tearing my hair out? YES! I’m over it! I’ve missed most of my exercise routine for the week, I’m losing a tooth on Monday and that will require my partial plate to be remodelled after the extraction site has healed. I now realise we may have all been chasing down wrong paths for a month and that is no-one’s fault – it is a fact of life with us complex comorbid patients. An elevated CRP isn’t a specific indicator, nor is an elevated ESR. I didn’t realise I had an infected tooth until late last week so I couldn’t tell anyone I had an infected tooth. Also, we do get used to waking up with a sore hand one day or a sore foot another day – we often pay little heed to these “glitches” – they become our normal. Except when they aren’t.

My GP rang proactively arranging an appointment for me for the Tuesday evening. I am sure she stayed late to fit me in. She wanted to make sure we now had all our ducks in a row and I love her for it. I’ve also written to my rheumatologist to bring him into the loop, although there’s not much he can do about teeth!

To top it off, at this time there are shortages of antibiotics. So I’ve got a single course of ten tablets. Let’s hope that is enough to ensure the local anaesthetic works! I needed two courses to clear the May/June tooth infection.

It isn’t over – yesterday the knuckle on my right forefinger decided to develop a bump. Redder than my camera captured. Interestingly that particular knuckle has a piece of cup stuck in there – a prime PsA attack site, therefore, I think. It’s OK, it too will subside. Once the tooth is gone. It seems possible the infection has also impacted my sinuses, so I’ll be interested to see if my blocked nose at night issue resolves as well. That would be good!

For those wondering why would a tooth infection cause PsA flares, it kinda goes like this. As with many treatments, my treatment for PsA suppresses the immune system, so not only are we more susceptible to infections in the first place, we are also less able to fight them off. The quote below may be scary reading to novices, but we live with it. Note the higher risk of developing shingles, which is why I had the shingles vaccine. A normal, healthy person may have fought off the tooth infection without batting an eyelid.

Serious infections. RINVOQ can lower your ability to fight infections. Serious infections have happened while taking RINVOQ, including tuberculosis (TB) and infections caused by bacteria, fungi, or viruses that can spread throughout the body. Some people have died from these infections. Your healthcare provider (HCP) should test you for TB before starting RINVOQ and check you closely for signs and symptoms of TB during treatment with RINVOQ. You should not start taking RINVOQ if you have any kind of infection unless your HCP tells you it is okay. If you get a serious infection, your HCP may stop your treatment until your infection is controlled. You may be at higher risk of developing shingles (herpes zoster).

https://www.rinvoq.com/

The existence of an infection though, can stir up the immune functionality we do have left and then PsA sees a crack in the wall and tries to break through. That’s a very lay description! I’ll never forget being told that my biggest Covid-19 risk factor was considered to be my underlying inflammatory condition. PsA and Covid-19 could have quite a party.

Let us look at the current news topic of pharmacists prescribing and the argument for Dental being covered by Medicare. Based on my symptoms, I could have many things and I have a complex medical status to consider prior to any treatment. I am knowledgeable about my own medical situation, but many patients are not and the knowledge and experience of the GP is invaluable. I have great faith in my pharmacist – I seek out their advice re drug interactions and what med to not take with what other med every time. I’m not as confident a pharmacist has the medical knowledge to safely and effectively diagnose me and then prescribe the right medication for me. The second point, dental coverage, should be obvious. My teeth have caused considerable angst and pain and are costing me dollars other patients may not have. It is false economy to not ensure we look after people’s teeth. Teeth lead to many other health problems, some extremely serious, which cost a lot more to treat that fixing a tooth initially.

In closing I would like to emphasise none of the above is in itself, for me, medically serious. My son-in-law is fighting leukemia – THAT is medically serious. That is life threatening. My challenges have been been painful, probably costly to the health system and certainly inconvenient. Yes, the outcome could theoretically (based on symptoms) have been more serious, but it isn’t. However, all chronic illness patients live with this complexity and disruption to our lives reasonably constantly. And every day we grow in number. THAT I discuss in detail in Will Society Adapt? When? How?

Robyn Dunphy3 Comments

Choosing Your Doctor/(s)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Robyn DunphyLeave a comment
leg press

I Am Angry

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

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

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

The Australians still putting their lives on hold to avoid Covid

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

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

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

I mitigate risk as much as I can:

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

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

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

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

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

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

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

Yes, I am clinically a vulnerable person.

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

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

If you have questions, ask those questions.

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

Robyn Dunphy2 Comments

We All Get Those Weeks

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

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

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

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

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

Specific grabs from the paperwork

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

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

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

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

I took Sunday as an active rest day.

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

My coffee mug!

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

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

I’m masked for public transport!

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

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

Reinstate Mandatory Covid-19 Isolation
Click here to sign

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

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

After my workout

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

My walking flowers

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

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

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

Robyn Dunphy3 Comments

What is Psoriatic Arthritis?

I mention having psoriatic arthritis (PsA), yet I’ve never explained in layman’s terms what it actually is. This is partly because initially I was diagnosed with rheumatoid arthritis (RA). There is reasonable general knowledge about RA so I didn’t write about it specifically at the time. There are over 100 forms of arthritis – PsA is just one.

PsA is also not to be confused with PSA. PSA stands for Prostrate-Specific Antigen. Usually in reference to the PSA test. In text the difference is clear, but I have had some funny looks from people when I’ve spoken PsA. Even in writing, for example on Twitter, people get confused thinking I’ve just made a typo with the little “s”, but I’m a woman, so….. how could PSA apply to me? It doesn’t. PsA does.

PsA is not nearly as well known as RA is. I know a fellow patient who just tells people she has RA rather than have to repeatedly explain what PsA is. All the PsA patients I know have run into healthcare workers who’ve never heard of it. It is quite similar in some respects to RA, but there are some major differences.

As the name implies, it is related to the skin condition psoriasis. PsA was officially recognized as a distinct disease in 1964 by the (now) American College of Rheumatology. The prevalence in the general population is estimated at around 1%, however the estimates vary. I’ve cited 1% as it is the figure I see most often. PsA is not technically a rare disease. While definitions of rare diseases are different in different jurisdictions, most definitions are around a prevalence in the population of 0.05%. Even so, at 1% we are not the most common patients around either!

Up to 30% of people with the skin condition psoriasis may develop PsA. I’ve seen numbers as high as 42% given in some studies, but for general understanding, 30% will suffice.

For readers who have never seen psoriasis there are different types and they look different. Here is my ankle during one recent flare as an example.

Psoriasis

The genetics of PsA are still being investigated, but strong genetic links have been found. It tends, therefore, to run in families. My doctors and I suspect I am third generation.

PsA is classified as a spondyloarthropathy. It is an IMID – immune mediated inflammatory disease. There are five different types of PsA and a person may have more than one type:

  • Symmetric arthritis
  • Asymmetric arthritis
  • Distal interphalangeal (DIP) predominant
  • Spondylitis
  • Arthritis mutilans

PsA can affect just about any joint in the body, it is not fussy (RA is a little more choosy). It moves around the body. It loves (in my case) entheses – of which we have more than 100! Entheses are where a ligament or tendon inserts into the bone. It can be very “ouchy”. It is also a disease that affects men and women equally.

Getting a formal diagnosis can still prove difficult. I’m a classic example as I was originally diagnosed with RA. I did not have really visible psoriasis at the time. My psoriasis blew up while I was on hydroxychloroquine – this was the driver of my new diagnosis. Hydroxychloroquine has been shown to exacerbate or induce psoriasis. PsA will also express itself in some patients before the skin condition presents itself. There are no easy tests to diagnose PsA, it is often a process of elimination of other possibilities. I was fortunate to be diagnosed and therefore treated early in my journey. We slowed the progression of the disease before too much damage was done.

Comorbidities are common:

Epidemiological studies have shown that patients with psoriatic arthritis (PsA) are often affected by numerous comorbidities that carry significant morbidity and mortality. Reported comorbidities include diabetes mellitus, obesity, metabolic syndrome, cardiovascular diseases, osteoporosis, inflammatory bowel disease, autoimmune eye disease, non-alcoholic fatty liver disease, depression, and fibromyalgia. All health care providers for patients with PsA should recognize and monitor those comorbidities, as well as understand their effect on patient management to ensure an optimal clinical outcome.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5298365/

I’ve had cysts develop that in one case was dissecting a leg muscle, in another case the cyst drilled a “huge” (that’s a quote from the surgeon) hole in a toe bone and I needed a bone graft. This sort of thing won’t happen to every patient, of course, but is an illustration of the sorts of challenges patients face. Nodules can grow on tendons – I have a few of those. Cognitive impairment, otherwise known as “brain fog” is common. Fingers and toes can swell to look like sausages, this is called dactylitis. I’ve had a whole hand swell up, while the other remained fine. Here is a comparison of my hands at the time.

Veins and tendons visible on the right, not so much on the left

I’m slowly losing fine motor control of my fingers. It is annoying, but manageable so far.

Malaise is another symptom that I don’t experience often, but it does pop up from time to time. Just feeling crappy, basically. Feeling very blah! Like pain flares, malaise can come and go unpredictably.

Fatigue or lethargy is a symptom that doesn’t get nearly enough attention. It can be debilitating and impact on the patient’s ability to manage the condition appropriately. Exercise is considered critical in the management of PsA, but if the patient has no energy, nothing in the tank, exercise can be challenging. This improves with exercise, over time, but it does take dedication on the part of the patient. Eating and sleeping properly go without saying, naturally!

Flares can appear out of nowhere and disappear as quickly as they arrived. I recall once waking with an excruciatingly painful wrist. Eight hours later it was 100% normal. Flares may also linger. I’ve had steroid shots in both shoulders, vastly different to my painful wrist experience. PsA is notoriously unpredictable. It can destroy your finger and toe nails. Anyone who follows me knows, for me that would be a devastating event! Hence the feature photo of my pride & joy!

No, I haven’t specifically mentioned pain, have I? Everyone’s pain is different. For the most part (aside from the occasional flare or when a medication stops working) I am pain free. That’s due to a combination of factors: early diagnosis therefore early treatment, exercise, appropriate medication. When my previous medication stopped working, I was in heaps of pain. I detailed that in “I Sat in my Car and Cried“.

This is not in any way a medical article, it is a short summary of what PsA is and can be for the newly diagnosed and family and friends. Below I have listed authoritative links readers may find relevant. I will update this list from time to time as new articles become available. Whatever I publish today will likely be out of date tomorrow as PsA is a condition that medical science is still investigating and learning about. The photos I have used are my own.

Informative Links:

Psoriatic arthritis – new perspectives (National Library of Medicine, PubMed) Very informative! (added here 09/05/2023)

Psoriatic arthritis: epidemiology, clinical features, course, and outcome (BMJ)

The Genetics of Psoriasis and Psoriatic Arthritis (The Journal of Rheumatology)

Genetics of psoriatic arthritis (PubMed)

Types of psoriatic arthritis (Psoriatic Arthritis Info, sponsored by AbbVie)

Spondyloarthropathies (HealthLinkBC)

Enthesitis and PsA (Arthritis Foundation)

Psoriatic arthritis – diagnosis (Mayo Clinic)

Understanding Arthritis (Arthritis Australia)

We Don’t All Look Sick: Invisible Illness (Limberation)

We Need Mental Health as well as Physical Health (Limberation)

Robyn Dunphy29 Comments

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!

Robyn DunphyLeave a comment

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!

https://www.betterbrains.org.au/

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.

Robyn Dunphy6 Comments

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.

Robyn Dunphy14 Comments