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

Covid-19: Worst Case Scenario Ignored

My random Tuesday thoughts: we are ignoring the Worst Case Scenarios. We are not planning ahead.

My previous writing on Covid-19: Covid Is Not Over

A related article re how society deals with the existing chronic illness population, which readers may find useful: Will Society Adapt? When? How?

Robyn DunphyLeave a comment
Watch

I LOVE a Mystery!

I do! I love a mystery. Be forewarned: this article is outside my qualifications or skill set – I just want to share the mystery. My interest in this mystery is, IF (and this is a big “if” at this point) wearables can detect increases in inflammation from monitoring various physiological metrics, how useful could that be to so many of us with inflammatory conditions?

As regular readers know, this has not been the best health year for me – not actually major bad things, but not exactly climbing Mount Everest either. To catch up a little for context, check out The Tangled Web of Chronic Illness.

Earlier this year, I bought a Garmin Forerunner 55 sports watch. I got it on special, just for the record. Now, I was rather upset to discover they’d stolen MY idea of an internal battery, just renamed it Body Battery. (No, I don’t really think they stole my idea).

It was interesting indeed. Here was I not feeling too crash hot and my watch was telling me my body was very physically stressed even when I lying in bed asleep. Here is December 14 as an example of the type of day I was seeing.

Body Battery

The orange bars are physical stress (draining), the blue are rest (recharging). Out of a max of 100, my battery reached a high of 33 that day and dropped to a low of 13.

What, I wondered, was this trying to tell me? My doctors weren’t very interested. It’s not a medical device, after all. Well, they may not be interested, but I am.

The watch is very accurate with other measurements: kilometres walked, GPS, step count. But was it perhaps faulty in this respect?

The first question I had was how is Garmin calculating this? Click the pic to read the full article

Calculation

I read several of the related publications, just chose the above to share here.

I was convinced my watch was telling me something. I even logged a support ticket with Garmin (still in progress as I write) but I have now decided the watch is onto something. That something MAY be inflammation.

Let’s move forward to the end of December, when I was having quite a bit of pain. After two rheumatologist visits and two GP visits between December 22 and January 3 and a steroid shot in one wrist AND (this is the kicker I think) starting on anti-inflammatory medication on Wednesday January 3, all of a sudden my body battery looks much more like I would expect it to look. Here is yesterday’s report! Compare the pair!

Yesterday I did stuff aside from walking. I did a big grocery shop, put all the groceries away, I worked in the afternoon and before lunch. I can match those orange periods on the graph with what I was doing during the day. I could not do that in December. Not only that, I reached a high of 85! 85! The low of 8 was at midnight.

Stunned I was! The only explanation I can come up with at this point is the anti-inflammatories. Started on Wednesday, took a couple of days to kick in. Plus, of course, I have started my new PsA medication and it will be hopefully starting to work behind the scenes as well.

This morning is looking very similar. By the time I woke up my battery was charged to 93!

Body Battery This Morning

Now, as I type this, I have used up some energy. I was out walking at 7:30 am this morning. I haven’t felt like doing THAT at 7:30 am for months. 2.5 kilometres, for anyone keeping tabs. As we know, over Christmas it was taking me until about 10 am to desolidify enough to walk.

Now, two days does not solve a mystery. I might be 100% incorrect in my deliberations. However, I’m sure you’ll agree it is very interesting. Is it not? I will be monitoring progress to see what happens from here on in.

Yes, I have updated my Garmin support ticket with this new information. I’m finding this quite intriguing!

One more graph. Garmin also provide a graph of your average physical stress over the days. Look what has happened.

Stress Graph

Robyn DunphyLeave a comment

I Have Retired. Should You?

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

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

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

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

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

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

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

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

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

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

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

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

Paint my nails! Of course!

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

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

Bring it on!

Robyn Dunphy11 Comments

Accessible Parking Permits – Part II

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

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

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

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

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

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

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

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

Bad me! But they are nice.

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

My FAVOURITE colour!

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

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

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

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

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

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

Robyn Dunphy2 Comments

Open Letter to VicRoads

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

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

Dear VicRoads,

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

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

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

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

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

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

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

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

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

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

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

Kind regards

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

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

Robyn Dunphy2 Comments

(Mostly) No Pain is FANTASTIC!

A few of my recent articles have been quite serious, so it is time to celebrate progress! After starting my new medication on January 14, 2022 I am happy to report I’m functional again! Friday I started Week 7 of my new medication and I very pleased with progress. Let’s hope it keeps working!

Readers may recall my list of painful bits from I Sat in My Care and I Cried. It was a pretty long list.

What was painful?

  • Shoulders
  • Ankles
  • All Toes
  • Left hip
  • Elbows
  • Wrists
  • Most fingers
  • Hands
  • Knees (yes, even the operated knee felt swollen, but not painful, the right was painful)
  • Neck
  • TMJ (jaw joint)
  • Left Achilles Tendon
  • I also had some plantar fasciitis

Today I can happily report all of that list has resolved except the shoulders and the plantar fasciitis. While I was on Prednisolone and the new medication together, the shoulders and the plantar fasciitis were barely noticeable, but as I tapered off the Prednisolone both reappeared. The plantar fasciitis is minor, only noticeable when I first get out of bed in the morning and hopefully will continue to improve the longer I am on the new medication.

The shoulders I am not so sure about. At my age and with prior injuries, I suspect the root cause of the shoulders may not be psoriatic arthritis (although it is undoubtedly not helping). The right shoulder is the worst of the two and that is the shoulder that has in the past suffered a torn rotator cuff. I’m doing lots of remedial exercises which will hopefully improve the situation (I’ll admit to letting those lapse while I was battling everything else). It is time to focus.

Other than that it is great to be able to do all these things again, pain free:

  • Fasten my bra (shoulders are at least allowing that)
  • Hold my full coffee cup in one hand (wrists)
  • Get out of bed without mobility aids (crutches or walking stick)
  • Sit down and stand up without immense difficulty (quads & glutes weren’t firing)
  • Be able to clench my fists (no, I’m not planning on using my fists!)
  • Turn taps on and off without pain (fingers & wrists)
  • WALK!!!!! (mainly ankles, although right knee & left hip had spasmodically interrupted)

That is not an exhaustive list, of course, but hopefully sufficiently illustrative! Functionally, I am almost back to (my version of) normal. I’ve been to the gym and done some hydrotherapy.

The only downside seems to be lethargy. I am quite tired. This may be temporary and may be due to my body adjusting to the new medication, the (tapered) cessation of Prednisolone and quite simply normal life things such as work-related stress. In order to give my body the best chance I have negotiated with my employer to drop my working hours to 24 hours per week. Initially this is for a temporary period of six months and then we will reassess.

The tiredness could possibly be my thyroid firing back up, although based on my last ultrasound we doubt that. Even so, that fact I do have an unhealthy thyroid cannot be overlooked. I’m due for monitoring checks again in April. I was, I gather, a little unusual as a radioactive iodine recipient. Many patients’ thyroid function becomes hypoactive after the treatment but mine never (not yet anyway) did. Both hypoactive (underactive) and hyperactive (overactive) thyroid conditions can result in tiredness/lethargy. Mine, theoretically, could go either way!

I am very concerned about the lack of strength training I have done over recent months as retaining muscle strength really is very important with this and many other arthritic conditions. However, I can’t rush back, I need to pace up again. That is part of the reason for reducing my working hours.

The shoulders, particularly the right one, may be being exacerbated by typing and mouse use. This is something that will also be reduced by reducing my working hours. Of course my bank account is NOT going to like less income, but that is simply a fact of life for those of us with chronic conditions: we have to make our bodies a higher priority than our finances, otherwise we end up with no finances at all as we lose the ability to work.

Overall, pretty darn happy! Of course, there are no guarantees. I’ll just enjoy the improvements while I have them! This gives me space to concentrate on rehabilitating the grumpy shoulders. I’m seeing my myotherapist regularly at the moment to assist.

Concurrent objective is to rid myself of the weight gain from the Prednisolone – there’s always something!

If you are interested in the fascia of the body, this is a great video! This is related to my seeking myotherapy treatment at the moment. More on this another day.

Robyn Dunphy4 Comments

I’m Not Lazy

Neither are YOU lazy. The title above is stolen, with permission, from a social media contact’s tweet.

We’re not lazy, nor are we responsible for other people’s expectations of what THEY think we should or shouldn’t be able to do. Sidenote: often those expectations are based on our appearance. Refer to You Look So Healthy! for more on that.

There are four other articles you may like to browse as background material to this article:

One of the challenges we face is helping people understand the whole energy availability thing many of us struggle with. In the conversation related to the above tweet, J told me she had mowed the lawns, done the edging, walked the dog and cooked dinner. J has the same disease I do, psoriatic arthritis (PsA). While I don’t know or understand the specific expressions of many other chronic conditions, this is one I do understand. J couldn’t see me, but if she could have, my eyes nearly popped out of their sockets.

Other conditions can be very similar, but I will stick with the disease I know for illustrative purposes today.

On a great note, for PsA management, J had certainly been moving. Movement is Medicine! However, J had probably used up more spoons or internal battery than she had available. All that in one day would cost her later, as she well knows from experience.

Society conditions us, well before we get sick, as we are growing up: doing our share, work ethic, earn our way. We then place expectations on ourselves. We don’t want to be sick, we don’t want to let others down by not doing our bit. In the first few years, of course, in the back of our minds we think it is temporary. To understand a bit more on that, you may like to read Will Society Adapt? When? How? Even we ourselves have to adapt to our new normal.

PsA is a very odd disease. At its worst for me, I can wake up in the morning with painful feet, ankles, knees, wrists, fingers; maybe even throw shoulders and neck in on a particularly bad day. I may have to use crutches to get around first thing in the morning. I’ll be unable to turn a tap on. Can’t lift the electric jug, struggle to open the coffee jar. Put on a bra? Are you kidding? Pull on tracksuit pants? Yeah, right. That sort of thing. About 11:30 am I’ll be fine. Virtually pain free. My body will have de-solidified. I’ll head out for a walk, go to the gym and do a weight training session. Sadly 160 kg leg presses aren’t happening any more, but maybe again one day…….. I am a completely different physical specimen at 4 pm than I am at 7 am. I saw my Plan B GP on Tuesday (Plan A was away), who hadn’t seen me for probably a year. She said “You look great!” This was 6:30 pm. I said to her, “You didn’t see me at 7 am!”

This can be VERY difficult for our friends, colleagues and family to understand. You need rest but you also need to go to the gym? That doesn’t make sense! Actually it does make sense and the reasons why are discussed in more detail in the above linked articles, so I won’t repeat myself.

We know, we can see it in their eyes. The doubt. The lack of comprehension of the situation.

We know people think we are just being lazy (at best) or hypochondriacs (at worst). J is right, it is VERY exhausting to be constantly explaining it to people, yet we know if we don’t explain it, if we don’t share the knowledge, social understanding and acceptance will never happen. We use analogies: spoons, internal batteries, even daisy petals. Over time our nearest and dearest do start to understand. If they want to.

If we live by the rules of pacing our activities and energy consumption, many of us can achieve a fantastic very nice quality of life, given our disease. The problem is, to OTHER people our rules can make us look lazy in their eyes – or at least that is how we can feel.

I work six hours a day. I have just entered my eighth year of having PsA, so I’ve had time and practice to build my personal pacing skills. Even so, I still feel guilty some days that I’m not “doing my fair share” at work. I have to lecture myself along the lines of this is what I MUST do or I won’t be able to work at all. I did try full-time for a while in 2019/2020 – it was WAY too much. Recently, we had a systems issue at work. That day I worked ten hours – I was petrified I was going to crash before we solved the problem. Thankfully, I didn’t, but those feelings and fears are what we live with every day. We don’t need to feel others are judging us because we MUST do less than they do in order to regain and retain quality of life and independence.

No, we do not have to vacuum the whole house in one day. A room a day would do!

No, we do not have to mow the whole lawn in one day. J, are you listening?

Spreading out those sort of tasks DOES NOT mean we are lazy. It means we are protecting our bodies, our internal battery and our quality of life.

Today I was going to go grocery shopping. But today is also weight training day. The grocery shopping can wait until tomorrow. Both on the same day would mean I wouldn’t be able to do what I have planned for tomorrow. Grocery shopping will fit with my plans for tomorrow as the overall intensity tomorrow is less.

We are not lazy. I am not lazy. Don’t let yourself be guilted into doing things that break your pacing rules, whatever they may be for you. The goal is to balance activity and energy so you achieve consistency in your state of health.

Robyn Dunphy3 Comments

Personal Energy Use

Early in my chronic illness life, I wrote an introductory article, Pacing for Beginners. More recently, I wrote about Pacing THRU, Pacing UP, Pacing DOWN.

Pacing, balancing my life, has become even more critical since starting a full-time job. The earlier articles talk about the spoon theory and the battery analogy. Today I’m going to stick with the battery analogy as we all understand what happens when our mobile phone battery dies. That’s it. The screen is dead. You can’t make a call. The only option you have is to recharge the battery.

I find energy difficult to write about. I can’t quantify it like I can quantify calories or steps or weights. Energy seems elusive, hard to pin down. Even though I am using the battery analogy, I don’t have a charge meter on my arm. I can’t tell how much battery I have left at any given point in time. So if it seems like I’m pondering as I write, it is because I am pondering as I write.

Many of us with chronic conditions are a bit like a mobile phone. The battery has a limited capacity. I’ve written about fatigue/lethargy before too, in When was the Last Time You Yawned? Working full-time hours again, I have had to revisit my condition management plan to ensure I avoid the dreaded Boom/Bust Cycle. So far, I’ve managed, although my weight training has taken a bit of a back step, sadly.

The difference between me and my phone is if my phone goes flat, I can plug it into power, turn it on and make a call. If my battery goes flat, that is it. Coffee is not going to help. A sugar hit is not going to help. In fact, either might make the situation worse. Imagine if that phone battery could actually go negative and had to be charged back up to zero before use, even when connected to power. THAT is how we can be (not how we can feel, how we can BE) if we are not careful, if we break the rules.

While I was working part-time, I had everything worked out beautifully for me. I got the exercise I needed, the sleep I needed, I did my job well. I never let myself get a flat battery.

While I was not working in the early part of 2020 my plan was to pace up my exercise to build physical resilience in readiness for a new job. With the success of my new treatment, I could do this. There were some interruptions! A knee put me in hospital, then Covid-19 lockdowns followed by a total knee replacement meant things were a bit stop-start, but I was way ahead of where I had been at, say, the end of 2016.

Working full-time has changed how I can arrange my time and also shone a light on the fact the boom/bust cycle is still very much a risk. There have been times at the end of the work day where I quite simply feel my brain shut down. It goes from 90 miles an hour to a dead stop. Nothing I can do about it. The battery is dead. It isn’t just about physical activity, this battery also runs our brain.

It is challenging for people who have no prior experience of these sorts of conditions to understand what happens. After all, many of us, myself included, LOOK fine! It took my daughter some time to come to grips with it, but she now asks “Do you have enough spoons, Mum?” when suggesting something.

I’ve become better at declining social invitations – no, not on an evening before a work day, or no, not two events on one day.

Every activity we do uses battery power. Showering, drying our hair, driving, working, exercising, cooking. In my experience some things use more battery power depending on the time of day: driving is a classic example. Driving for one hour in the morning is not nearly as tiring as driving for one hour in the evening after a day at work. It is almost as if once the battery gets low, it depletes faster. We have to be aware of all these things. I don’t want to cause a fatal car accident because I lose concentration because I haven’t paid heed to my battery level. Look at the pace column of my walks in the image above. the first walk of the day is the fastest, the last is the slowest. This is a constant pattern.

Early in my journey, I would have been unable to do a weight training session and grocery shopping on the same day. That would have used way too much of my battery. Even now, I shower in the evenings. Why? Because I can do it at a slower pace in the evenings and I am not using up vital battery life I need for the work day.

A good night’s sleep should recharge us, you say? We wish that were true. In many cases it is true – unless we have drained too much – then we end up in that negative charge scenario. Not good. However, disrupted sleep is often a symptom experienced by those with chronic conditions. Imagine trying to charge your flat phone, but the charger plug keeps falling out of the phone overnight. In the morning your phone battery is still at only 50%. That can be us.

Strength can fluctuate as well. I happily did 32 kilogram chest press sets one day with every intention of increasing next visit. Next visit I struggled with 25 kilograms. Why? No idea. By no idea, I mean no rational “healthy” explanation. Just that day my body said, “No, not today”.

Endurance is linked to our battery too. Some days I can walk two kilometres easily in one walk – other days I have to stick to three separate one kilometre walks. I’ll feel exactly the same at the start of any walk – then sometimes the body just says, “No, not today”. Part of this is linked to my not having the time available at the moment to consistently Pace UP. Between work and weather I have been limited to grabbing my walks in a somewhat patchy manner which breaks all the rules of pacing. Consistency is key. I’m not getting consistency. I suspect similar applies to the weights.

It is very hard to explain to people what this whole energy thing is like. How we constantly have to be aware of how much battery we’ve used. Healthy people would not, for example, think of having a shower as using energy, or should I say using any great amount of energy. I can assure you, many of the chronic illness community will attest to having to rest after a shower.

In my last article I raved, quite rightly, about the medication I am on. I also stated it hadn’t completely solved the energy/lethargy/fatigue aspect, or the “brain fog”. Despite my writing about energy today, these aspects are still much improved from where I was three years ago. To give some sense of measurement, three years ago I was working 24 hours a week and Saturday morning would always be a recovery morning – I’d do nothing until at least noon. Now I am working 38 or more hours a week and I’m actively doing something by 10 am on Saturdays. I might be at the gym, grocery shopping, doing laundry: I’m active. So a major improvement. And some quantification, which makes me happy!

However, I’ve had to cut my second weight session a week because the energy required to drive to the gym, do weights, drive back and then shower is more than I can manage at the end of a work day. I rarely write any more because usually by the end of the work day my brain has said, “No, not today”. I started this article on December 31, it is now January 16 and I still feel this is very scrappy writing. On the other hand it is a very scrappy topic: as I said I can’t quantify it very well. My thoughts about it come and go: after all, we learn, over time, to live with it. It becomes our new normal. At the same time we recognise that our healthy friends, family and co-workers can be baffled by something they have no experience of and it is not visible.

When I wake up in the morning, assuming I haven’t overdone it the day before, I feel perfectly “normal” just as I did before I became a chronic condition patient. The main difference is at the end of the day I will NOT feel as I did at the end of a day back then. Furthermore, depending how much “charge” I use during the day, I could hit that flat battery state earlier in the day. Other patients will not be as fortunate as I am, I am aware of that. So readers, just because I say I can do something, DO NOT, please do not, assume your mother, father, sibling, friend or co-worker can. They may be “better” or “worse” that I. I am simply n=1 – I’m not a study, I’m just one example trying to explain what it can be like!

As I write, at the beginning of 2021, I am very concerned for the long haul Covid-19 patients, many of whom cite fatigue as an ongoing issue. While the studies of this phenomenon may shed scientific light on ME/CFS, we will also have more chronic patients. My thoughts on society and chronic conditions are expressed in Society and Chronic Health Conditions. As communities, we have challenges ahead.

Robyn Dunphy8 Comments

Brain Fog? Cognitive Impairment? Which Sounds More Serious?

As a chronic illness patient, I am over the term brain fog. Let’s be honest here, it is cognitive impairment. Two years ago when I wrote “Yes, Brain Fog IS a Thing“, I was more concerned with ways to deal with it on a day-to-day basis than investigating the neurological, physiological or immunological causes or possible relief.

Cognitive impairment is a symptom experienced by MANY people with chronic conditions, irrespective of age, yet the term is more commonly associated with older people. Google cognitive impairment and nearly every result will couple cognitive impairment with “the elderly” or “in aged care” and similar phrases.

All is not lost, however – there IS recognition! And hope!

Cognitive disturbances, mood disorders and fatigue are common in SLE patients with substantial adverse effects on function and quality of life. Attribution of these clinical findings to immune-mediated disturbances associated with SLE remains difficult and has compromised research efforts in these areas. Improved understanding of the role of the immune system in neurologic processes essential for cognition including synaptic plasticity, long term potentiation and adult neurogenesis suggests multiple potential mechanisms for altered central nervous system function associated with a chronic inflammatory illness such as SLE.

Source: Lupus brain fog: a biologic perspective on cognitive impairment, depression, and fatigue in systemic lupus erythematosus

“Cognitive disturbances”. Not quite enough in my view. The title does, however refer to cognitive impairment.

Although widely used, I find brain fog to be a somewhat dismissive term – it just does not sound as serious as cognitive impairment.

Because mine was relatively minor, only really noticeable to me, I asked other patients about their experiences. Here’s what they had to say. I am sorry I couldn’t use all the responses I received!

“To me it’s like trying to fight through treacle.” ~ A

“I cant cope with multiple processes. I need things written down.” ~ J

“One recent trip [overseas] hubby went on, the flight wasn’t direct and took more than twice the time to get there. I was hysterical, and had zero recollection of the change in flight timing.” ~ N (Note, this patient does have a Functional Neurological Disorder diagnosis)

“… impossible to do more than one thing at a time. I can’t cook and carry on a conversation. I can’t wash clothes and pay bills …” ~ T

“I just don’t trust myself with details anymore. When making med appts etc I check and double check and still get things wrong. My confidence is so low when doing paperwork etc” ~ J

“I sometimes think it is more debilitating than the pain as I have learnt to push through the pain but I can’t push through the fog.” ~ M

“When my brain fog is bad I cannot process people’s speech. I describe it as words floating past me like pretty butterflies – I hear them so know they are there, but they have no meaning.” ~ F

“I wish more people understood that it’s not just being forgetful.” ~ Hannah, who writes at Sunshine and Spoons and has ehlers danlos syndrome.

Language is important. The terms we use are important. Cognitive impairment is damn important.

In chatting to my gastroenterologist one day, I complained about cognitive impairment. I said to him, “If I were a doctor, I would have to give up practicing.” His eyes nearly popped out of his head. “Really?”, he asked. He and I have known each other quite some time now – he knows I am not the type to exaggerate. I knew from his reaction I had spoken in a language he understood.

The reality is I could do my accounting or IT roles in a wheelchair. True, my personal trainer hat would be more difficult in that case. I can’t do those jobs without my cognitive abilities. If I do make a mistake though, I am not risking anyone’s health outcomes. If I was a surgeon, in the middle of surgery and I forgot or could not decide where to cut next: that could be a problem. If I misread a blood test result, or prescribed the wrong dose of a medication (although pharmacists are a double check with prescribing) the impact on the patient could be negative.

Although my cognitive impairment has been very mild compared to other patients, I would still notice it. I knew it was there. In the early days of my illness, before we got things under control, it was worse. Even so, I was so ecstatic when this happened:

Remembering that number was so fantastic (to me) I emailed the clinical trial co-ordinator to tell her! I was in a meeting at the time and I was clearly excited. I was ecstatic! I have written before about brain fog – like fatigue, it is something many chronic illness patients battle with.

Source: A Clinical Trial – Patient Journey – Part III

Of course, fatigue and cognitive impairment go hand in hand in many situations. This is well known and why workers should not be driving home after very long hours. Yes, they could fall asleep at the wheel, but also their reaction times will be impaired.

The quotation above from the SLE study indicates how difficult research is into this area, as it is with fatigue. There can be SO MANY contributing factors: the underlying condition, medications, pain, fatigue, poor nutrition, lack of adequate hydration, lack of exercise, poor sleep, onset of menopause, age (MCI for example) – the list goes on. My objective is to highlight the seriousness of it. I would love to see the term brain fog done away with. When I mention it as a symptom, I want to see the reaction I got from my gastroenterologist – acknowledgement that this IS A SERIOUS ISSUE. Let’s have a serious name for it.

I have REALLY noticed the improvement, since the new medication kicked in. I feel my reaction times when driving are normal, I remember where I put my glasses, I’m writing (you can judge whether I’m writing well or poorly!), my concentration lasts well into the evening, I don’t need a shopping list.

This is great for me, but my thoughts are of the other chronic illness patients out there struggling to get their health providers to acknowledge the seriousness of this particular symptom on their quality of life – including employability. I’m also well aware that even if it IS acknowledged, we may be a long way from finding solutions – but if science don’t consider it a serious issue, science won’t look for solutions.

After I wrote the fatigue article (linked above), I had one patient say to me she has simply given up mentioning fatigue to her doctor. I understand why, but we can’t give up because then doctors don’t see it as being as important as it is. Unless, of course, they suffer one of these conditions themselves and have been through it.

In the five years I’ve had my conditions, I’ve been asked MANY times about my pain levels. About my mobility. I do not recall EVER being asked about fatigue or cognitive impairment. Now, to be fair, the generic “How are you feeling?” could be an all encompassing question, but I’ve never got the impression it was including either of these symptoms by default.

So – over to you, fellow patients!

  • Do you experience cognitive impairment/brain fog?
  • Do you prefer “cognitive impairment” (or some similar name) or “brain fog”?
  • Do you, as a chronic illness patient, feel cognitive impairment as a symptom of your underlying condition is seen as important by the medical profession?
  • What impact does cognitive impairment/brain fog have on your quality of life?
  • Do you feel in your case it results from pain, medications, fatigue or is it a separate symptom of your condition?
  • Do you think your family and friends understand your cognitive impairment/brain fog?
  • Has it impacted your career, work choices or employability?
  • If you are a family member of a chronic illness patient, do you feel you understand?
  • In your experience, is cognitive impairment/brain fog adequately recognised?
  • Anything else you would like to share?

PLEASE NOTE: Cognitive impairment can be caused by a great number of medical situations and can range from annoying to critically serious – this article is ONLY addressing where it is a symptom of an underlying condition, such as described in the SLE quotation provided above. If you are concerned about ANY change in your cognitive abilities, please consult your doctor.

Robyn Dunphy8 Comments