Medications

The Costs of Medications

In 2018 I wrote “The Costs of Chronic Conditions” highlighting how many of our condition management costs are not recognised by “the system”.

Today, I’m going to look at medication costs in more specific detail, to paint a realistic picture of what happens. Similarly to my article yesterday, I hope family and friends may find this useful in building their understanding of the financial situation the patient in their lives is perhaps dealing with. The details I provide here are simply to paint the landscape. Every patient will be different, but the overall picture is one of many dollars on medications, not all covered by the Concession Card (IF the patient has one). Most of us don’t just take one medication for one condition: as you will see here, we end up taking medications to counteract the actions of other medications. It gets messy. And costly.

I am very concerned that a number of Long Covid patients are going to find themselves in exactly this situation, without a Concession Card.

For ease of calculation and summarisation, in this article the medication prices I quote are rounded up to the nearest whole dollar. E.g. Panadol Osteo is $9.49 where I buy it, in this article I’m citing $10. Prices vary between brands and retailers, I’m using the pricing of the brands I buy.

“But you have a Concession Card, your prescriptions are only $7.30!” I hear people cry. SOME of our prescriptions are only $7.30. Some, by no means all. On top of that many of us need over-the-counter medications. Prime example is the Panadol Osteo mentioned above. Not a prescription medication. $9.49 for 96 tablets. Six tablets a day usually, so that will last 16 days.

While on the topic of pain management, here is a strange anomaly for you. Palexia is a good pain medication that comes in both instant release and slow release. Guess what? The slow release is covered under the Concession Card (CC), the instant release is not. $20 for 20 tablets. I have needed both formulations during my recent “difficulties“. How long does 20 tablets last? Depends on the situation.

Here’s were it starts to get complicated. Pain medications have a well earned reputation for causing constipation. So now, per my gastroenterologist, I need to counteract that by buying Coloxyl and Movicol, both over-the-counter medications. Movicol is $20 for 30 sachets. Coloxyl is $14 for 100 tablets. Pain medications can also cause nausea, hence the Ondansetron (prescription, not covered by CC), although I do suffer nausea from time to time even without pain medication.

If I am taking NSAIDs (non-steroid anti-inflammatory drugs e.g. Celebrex) I have to double my Somac (pantoprazole). So while Somac is covered by the CC, now I need to fill the prescription more often resulting in increased cost.

Of the 16 items (a mix of OTC and prescription) listed below, only seven are covered under the CC. Less than half.

MedicationCost
Panadol Osteo$10
Movicol$20
Coloxyl$14
Palexia SR$7
Palexia IR$20
Somac$7
Prednisolone$7
Celebrex$7
The magic biologic$7
Thyroxine$7
HRT$7
Enstilar Foam$7
Dymista (nasal spray)$49
Saxenda$387
Zyrtec (for hayfever)$30
Ondansetron$17

There are other things not listed above. The Fess Saline Nasal & Sinus Wash kit was $13. Because of my psoriasis I don’t use soap or typical shampoo. T/Gel shampoo is $15 and Ego Pinetarsol solution is $22.

If I were starting from scratch to get all my “stuff” I would need $653 to buy all the above.

Then there are the unexpected events, such as needing an ultrasound guided steroid shot in a finger recently. When booking, I was told the cost would be $285. I said that’s fine, I’ve reached the Medicare Safety Net Threshold. The staff member did not tell me $115 of that charge was NOT rebateable!

Why am I tacking Saxenda? Because both Prednisolone and Thyroxine can make the patient hungry. Diabetes is a common comorbidity with PsA, so this is preventative, we do not need me developing diabetes. I should clinically be on Ozempic (MUCH cheaper) but there is a shortage as we know.

If a patient is still working and not on a CC, then the prescriptions will be dearer. Yes, there is a PBS Safety Net, but not all medications count towards it – talk to your pharmacist about your specific medications. Non-prescription items like Movicol and Coloxyl do not count towards the Safety Net either.

You or your family member may be on completely different medications and OTC products, but the overall picture is likely to be very similar. Lots of dollars for lots of items.

The picture above does not have everything in it, I just grabbed enough packets to populate a photo! In my forties, had you asked me for a Panadol, I probably would not have had any in the house. How times change.

I only have me to worry about. What of a young mother with my conditions? Finding those dollars could be very difficult. That patient may skip medications in order to feed her children. We need to improve our support of chronically ill patients, as I discuss in “Will Society Adapt? When? How?“

Footnote: In this article I have NOT addressed the issue of very expensive medications that are not subsidied under the PBS at all. Years ago a girlfriend of mine was spending $3,000 every six weeks for an infusion. She campaigned to get that medication onto the PBS, but by the time that happened, her savings were virtually non-existent.

Robyn DunphyLeave a comment
In hospital again

Changing Medications – What Can You Expect?

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

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

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

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

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

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

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

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

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

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

Blood Pressure

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

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

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

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

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

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

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

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

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

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

Robyn Dunphy4 Comments

A Dark Day

Trigger warning: this article covers issues that some people may find confronting.

Please be aware as you read this, I am fine. I debated about sharing this experience as I don’t want to worry anyone, but on the other hand the purpose of this site is to help people like me living with challenging health conditions. Yes, the primary emphasis is on exercise and Movement As Medicine, but so much of “life” impacts our struggle on a daily basis, I do venture off on non-movement tangents. This is one of them.

I feel if I do not share this experience, I am not being fair to my readers. One of my objectives is to illustrate we are not alone in our battles. The challenges might be different for each of us, but there are threads of similarity.

As we know, I was recently hospitalised. While there I had three methylprednisolone infusions. Shortly after coming out of hospital my prednisolone (by tablet) dosage was upped to 50 mg per day due to my ongoing psoriatic arthritis (PsA) inflammation. For me, that is a LOT of corticosteroid. It may not clinically be a lot, but I do not know that – I am the patient here, not the clinician.

Most of my life, I avoided anything “cortisone” sounding like the plague. Why? Well, the answer to that can be found in my recently published family history trilogy, starting with “The Background“. In case of “too long; did not read” reactions, short version is my mother committed suicide, I suspect as the result of psychosis – a possible adverse reaction to cortisone use. She had been on cortisone most of her adult life. Probably at higher doses that we now use. Consequently I have always been wary of carrying a possible genetic predisposition to an adverse reaction to the medication.

Over the years since my diagnosis of PsA, I’ve taken prednisolone periodically at generally small doses with no major issues. Sure, for me, it makes me as hungry as a lion, causes fluid retention, weight gain, disrupts sleep (OH, does it disrupt sleep) and my ability to control emotions is reduced. If I am angry, you will hear it in my voice and see it in my eyes.

Today is Wednesday. Yesterday started with absolutely no sleep Monday night. I had slept like a baby Sunday night, which may have been part of the problem – I wasn’t tired Monday night. And yes, Movement As Medicine does come into this because on Monday I did very little movement because I had been to see my GP, driving around, my ankles were sore etc: the very reason I was taking prednisolone in the first place, after all. So I went to bed not physically tired. I couldn’t fall asleep, even with melatonin on board. I did not sleep. All night. May have snagged an hour between 6 am and 7 am, but I’m not even sure of that.

So Tuesday was a pretty shit day, to be honest. It got worse as the day went on. I did not get dressed. There was no lipstick. I felt really, really flat. If anything, a bit like I had felt when I had a reaction to methotrexate. I think that prior experience may have been concerning me a little as well.

Please note: both the medications I talk about in this article work brilliantly for a great many people! I am NOT against the medications themselves in any way.

Now, I’m not sure how to make this next bit clear: if it is unclear, please ask for clarification. The doctor will ask (as she did when I rang) are you having any thoughts of self-harm or suicide. And my answer is “No, not for ME, but I am always aware BOTH my parents did commit suicide and am VERY clear to myself that is NOT where I want to go. HOWEVER, I’m very ignorant (Note to self – fix this ignorance) about what or how “it” could happen. Therefore I think about it in terms of the history and the fact I am on a related medication.”

Now, I have no clinical evidence of my mother’s suspected adverse reaction. However, neither am I going to ignore the possibility. Sadly, I can’t get clinical evidence. It is too long ago, I was provided no medical records at the time. It wasn’t deemed necessary to give kids their parents’ medical records.

At 6:30 pm last night I rang my wonderful GP clinic. I do love them so much! My GP was not available but I did speak to another GP. I explained the situation and said my biggest concern, I realised, was I had NO IDEA what to watch out for IF I was having or going to have a adverse reaction. I also pointed out it could just be the absolutely no sleep, I was aware of that. At this point I hadn’t slept for 36 hours.

The GP pointed out psychosis was considered a very slight risk adverse reaction: I said I understand that, but my family history sort of counteracts that statistic in my mind. I prefer to be cautious!

The GP gave me some contact numbers specific to my location (hence I’m not publishing them as not much use to people in Queensland, for example) should I feel worse at (say) midnight.

Because I was SO exhausted by bedtime I slept like a log and woke up this morning feeling normal. Well, normal for a sick person on ten prescription medications and a few non-prescription ones like melatonin and Panadol Osteo plus Coloxyl to counteract the effects of the pain medications. At no time in my previous eight years of this journey have I been on TEN prescription medications at once and hope very shortly we get that down to three and then two (one for the thyroid, one for the PsA – that’s enough). Do I worry about possible interactions of so many meds all at once? Yes, I do. I just hope if there was a problem it would have been discovered before now.

My message here is don’t be afraid to reach out to your medical team. I could have called my psychologist, my rheumatologist or my GP. I chose my GP because she is who I feel knows me best and would most easily understand where I was coming from. I feel really concerned for chronically ill patients who do not have continuity of provider, it is SO important in managing our conditions. Critical, in my view. But what would I know – I’m just a patient. That comment is made with a very cheeky grin – none of us are “just a patient”. I can’t emphasise strongly enough the benefit it was to me to be able to talk my concerns through with the GP last night on a telehealth. I was able to go to bed not worrying, which I feel contributed to my good night’s sleep.

I’m back to this version of me today!

Mental Health Contacts:

Lifeline: https://www.lifeline.org.au/ Ph: 13 11 14

Beyond Blue https://www.beyondblue.org.au/ Ph: 1300 224 636

I have written about the need for mental health support previously: We Need Mental Health as well as Physical Health

Robyn Dunphy2 Comments

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

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: 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 Dunphy15 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 Dunphy12 Comments

Not All Shingles Vaccines Are The Same

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

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

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

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

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

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

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

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

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

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

Information Links you may find useful:

National Immunisation Program Schedule

Shingles (herpes zoster) immunisation service

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

Shingles: Clinical Overview & Complications (CDC)

Slideshow: A Visual Guide to Shingles

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

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

Robyn Dunphy5 Comments

A Tale of Two Days

I had a typical chronic illness experience this week. I’m writing this article particularly for family, friends and colleagues of patients, to increase understanding in the community.

Edited to add: After publishing this I decided to add a personal thought. Other chronic illness patients may or may not agree with me, so check first! We are not looking for sympathy. We definitely aren’t looking to be told to try extra Vitamin C, D or K. We don’t want, “But have you tried….” because trust me when I say this, most of us have agreed our treatment plans WITH OUR MEDICAL PROFESSIONALS.

So what do we want? Just acceptance! Accept what we say at face value, don’t doubt us. We aren’t making it up. It is what it is and many of us are very used to it and just get on with life as best we can. We don’t want a fuss. I’m not saying we don’t welcome kind thoughts or offers of assistance. Yes, you can certainly make me a nice cup of coffee or tea, that would be lovely, thank you. But the most important support you can offer is acceptance and understanding without doubting what we say and without making a fuss as if you expect us to keel over in the next hour. This may not be your normal, but it is our normal.

We hear and talk a lot about chronic pain in relation to chronic illness, but as we know from my last article, I’m pretty much pain free on my new medication. That is very pleasing. Pain is not the only debilitating issue we face.

Wednesday night I did not sleep at all well. I had an intense two hour meeting and worked an extra hour on Wednesday – did that contribute to the bad sleep? No idea. Woke up Thursday morning feeling shit. There is no other word for it. While I do try to stay polite in my articles, the lovely medical word I like, malaise, didn’t quite cover it. Unwell didn’t cover it. Clinically, my experience would likely have been classified as malaise, but that is such a nice sounding word it didn’t cover how I would have described the feeling. I want to stress, no pain. Pain is NOT our only problem.

I doubted I could actually work, but we had a 9:30 meeting scheduled so I dressed, braved the world. When I say I braved the world, let’s not get too ambitious here! I work from home, so braving the world entailed throwing my hair in a bun, putting on some clothes and some lipstick and sitting in front of my laptop camera for a Teams meeting! I did warn my colleagues I felt crap and doubted I’d make it through the day but would work as long as I could. Stomach pains then arrived, along with a couple of trips to the bathroom – I think you get the picture.

However, by 1 pm I felt relatively normal and completed my work day (quite productively, as it turned out) although I was a little hyper, which made no sense either. Logged off at 4 pm, sat down in an armchair and a wave of nausea engulfed me. My stomach felt funny, just funny. I was a little dizzy. The unwellness was back with a vengeance. I had a 5 pm appointment with a girlfriend for iced coffee and cake. There was no way I was going to be able to drive or have cake. I cancelled. Dug deep in my medication supply and swallowed anti-nausea medication and took a Somac (Pantoprazole). By 6:30 pm I felt marginally better. Went to bed reasonably early (for me, that is).

Slept like a log! Best night of sleep for the last two years, I think. Woke up Friday morning all cylinders firing! Went for a 1 kilometre walk before work. Worked my usual hours without issue. Waited for the temperature to drop (the weather temperature, not mine, mine was fine) in the evening and walked another 1.3 kilometres at just after 7 pm, before the rain arrived.

This morning (Saturday) I am giving my body it’s usual Saturday morning recovery-from-the-work-week time and I will head to the gym this afternoon for a weight training session.

So what on earth happened Thursday? I have NO idea. I hadn’t eaten anything different, I hadn’t been out partying, I hadn’t overly exerted myself physically on the Wednesday. I suspect the bad sleep wasn’t the cause, but a symptom – of course I can’t prove that.

These episodes, while not painful, are very restrictive and affect quality of life. I’ve been trying to think of a way to describe the situation that healthy people may relate to. You see, most people have experienced an episode of pain in their life: a toothache, a twisted ankle, recovered from surgery, headaches, a broken bone, a sports injury, something. Although healthy people might struggle to really understand chronic pain, most do understand pain itself at some level and know it exists in different degrees of severity. Most people who have not experienced malaise have no similar experience to inform their understanding of what the patient is going through. We look fine, no bandages, stitches, crutches – so what’s wrong with us?

The closest I can come up with is imagine you have a case of influenza but without the temperature, runny nose and headache. You just feel shit. Throw in a bit of lightheadedness and nausea (but no throwing up) for good measure. Don’t confused malaise with fatigue or lethargy, although they can sometimes arrive hand-in-hand.

Healthy people (e.g. family, friends, colleagues) can find this difficult to comprehend. It arrives out of nowhere, lasts an indeterminate time, may fluctuate and is extremely annoying and quite debilitating. I don’t like cancelling coffee dates with friends. The patient literally may not be able to do anything. I couldn’t on Thursday afternoon/evening, I just sat until I went to bed. Feeling extremely annoyed, but there was little I could do about the situation. It may not happen again for six months. It might happen again tomorrow. We never know.

If someone you know has these episodes, be gentle and supportive, even if you don’t understand. Trust me, we don’t like it either.

Robyn DunphyLeave a comment