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?

(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.

The Right to Die at a Time of Our Own Choosing

I am aware some people may find this article confronting or disconcerting, so I caution readers to consider whether they are ready for this topic. If in doubt, perhaps revisit at a later date.

Western society in particular seems to have a very unrealistic approach to death. There is a tendency to avoid death at all costs. We have no choice about being born, at least grant us the dignity to control our end of life.

When I was about 12 I watched my grandmother spend the last years of her life bedridden and with dementia in a care facility. I thought this was a very sad ending to her life. When I was about 16, a partner in a local legal firm passed away at his desk, almost but not quite mid-conversation. By comparison to my grandmother’s suffering, I thought what a wonderful way to pass. He was doing what he loved, retained full mental capacity to the end, not a day in hospital. That was the sort of death I have envisaged for myself most of my life. I would be swimming or walking and the it would just happen. I suggest many of us do have similar thoughts, if we think about it at all in our younger years particularly. It is perhaps only when we have health challenges (which can be any age) or later in life that we think about the realities of what might happen.

In 2018 I read the best article I have ever read on this topic: The doctors who think it’s become too hard to die. It is a beautifully written article and while I do share some quotations herein, I highly recommend you read the article.

From the article linked above – Professor Hillman’s family experience

In some respects, this article has a connection to two other recent articles of mine.

In Victoria we have Voluntary Assisted Dying (VAD) legislation which was a wonderful innovation, long overdue, when introduced. HOWEVER it is very restrictive. The patient and ONLY the patient can request VAD at the time it is deemed appropriate. In addition the patient has to be terminal (within a specified timeframe) and experiencing unacceptable suffering.

You can only access the voluntary assisted dying medication if you meet the conditions set out in the law. These conditions are:

  1. You are in the late stages of an advanced disease and expected to die within weeks or months, but not more than six months (or 12 months if you have a neurodegenerative disease, such as motor neurone disease).
  2. You are experiencing suffering, which you consider unacceptable.
  3. You have the ability to make and communicate an informed decision about voluntary assisted dying.
  4. You are making a voluntary, continuing and fully informed decision about voluntary assisted dying.
  5. You are an adult, 18 years old or over.
  6. You are an Australian citizen or permanent resident.
  7. You live in Victoria and have lived in Victoria for the last 12 months.

If you do not think you will meet these conditions but are thinking about voluntary assisted dying, you can still discuss this with your doctor.

https://www.health.vic.gov.au/patient-care/do-i-meet-the-conditions-for-voluntary-assisted-dying

This means we cannot plan ahead. People, whether 100% healthy at the time or already patients, cannot put in place, in advance, instructions to be carried out under certain future circumstances. Our agency, our control of our own life, is denied us by social convention. Admittedly, people often don’t think of such circumstances in their younger years – it isn’t until the likelihood becomes apparent that any of us start thinking “what if….”.

The desire to keep sick people alive for as long as possible, he says, is reinforced by doctors who are “programmed to make you better”.

“Doctors hate saying, ‘I can’t do anything’. We’re curers, healers, miracle workers,” he says.

The outcome, he says, is that it’s hard for us to recognise when a life is better left to end.

https://www.abc.net.au/news/2018-07-28/rethinking-our-approach-to-death-and-having-a-plan-for-dying/10014582

Interestingly, the above quotation was paraphrased unprompted by one of my own doctors when I was talking to her about the topic I cover in my Will Society Adapt? When? How? article. She emphasised the same sentiments re “curers, healers, miracle workers” and “programmed to make you better” expressed above. At what point does “first, do no harm” become contradicted by trying to prevent death? Well, you see, that phrase actually isn’t in the Hippocratic Oath at all. If I have tweaked your curiosity, visit https://www.health.harvard.edu/blog/first-do-no-harm-201510138421 at Harvard for a discussion on the topic.

If (as I have) we appoint a Medical Treatment Decision-Maker, that person can request the cessation of treatment on our behalf, but they cannot request intervention to proactively end life.

Any number of medical situations could arise where I might be suffering but ALSO be deemed cognitively incompetent. Another quote from the VAD link above: “This means that you cannot request it in an advance care directive, because voluntary assisted dying is not available to you once you have lost the ability to make a decision about it“. The very situation I personally fear most, that of lying in a hospital or aged care home bed in pain from my arthritic conditions AND with severe dementia, being kept alive merely so I am not dead, cannot be dealt with in a manner that allows me agency over my death. I find this horrifically cruel. I was quite surprised when a psychologist said to me “but you won’t know”. No, I might not (are we 100% sure of that?) but personally I would rather the costs and health care resources involved be used to help a person with a more favourable prognosis.

Many of us have a family history of dementia. I’m participating in a study at the moment which is looking at ways to slow or even prevent the onset of dementia, but being part of a study doesn’t mean I won’t ultimately develop a form of dementia. Studies have recently indicted that those of us with underlying chronic health conditions in middle age (oh, yay, lucky me) are two and a half times more likely to develop dementia. Another ramification of us being able to keep people living longer, as discussed in previous articles.

Having two or more chronic health problems in middle age more than doubles the risk of dementia, according to a study that researchers say underscores the importance of good health earlier in life.

https://www.theguardian.com/society/2022/feb/02/two-chronic-health-problems-middle-age-double-dementia-risk-multimorbidity-study

Other life events could leave any of us declared to no longer have decision-making capacity. I could have a car accident, I could fall and suffer brain damage. I could catch a virus that leaves me with brain damage (looking at you, Covid-19). It may not be dementia.

Yet should such a situation arise, we are trapped. Literally trapped. For many conditions, if treatment is withheld the conditions may become terminal quite quickly. For many other conditions, however, that is unlikely: we could be lying there for years because we do not have conditions that are terminal in and of themselves. Ceasing treatment may simply mean higher pain levels – I’ve already had a taste of that in I Sat in My Car and I Cried. I can only imagine how bad that could get.

The media has been alive lately with horrifying stories of the state of care in privately run aged care homes, yet clearly if I were in the state described above I would be unable to be cared for at home by my offspring (my daughter is only 24 years younger than I) or via My Aged Care. Nor would I want to be – I would want to be allowed to say my time has come, I’m leaving now. Irrespective of the quality of any aged care home (a topic for a future article), many of us don’t want to spend our final months or years in insufferable pain or other circumstances and unable to “check out”. I do understand that doctors would manage the pain, but that seems rather pointless doesn’t it? Just managing the pain with no prospect of any quality of life, just so I’m not dead.

Under NO circumstances would we have let a farm animal suffer in such a state when I was growing up on the farm. My father would have been horrified at the thought of putting any of his animals though such a situation. Yet humans are happy to force other humans to suffer, simply so we can say they aren’t dead.

I understand completely the ultimate decision can be painful for relatives and for the doctors. I believe this can be traced back to our culture’s unwillingness to accept the simple fact that there is nothing guaranteed the day we are born – other than the fact we will die. That is the cycle of life. Other cultures view death quite differently.

Allowing us to legally set out clear, concise instructions ahead of time would be the compassionate approach. Not everyone will make the same choices. A contact on Twitter related the case of their parents the other day. The mother wanted to go when she considered the time was right given her health state, yet the father wanted to do anything possible to extend his life. It is an individual choice.

Dr Corke says medical practitioners also need to be honest with patients and their families when certain interventions might be futile.

“We’ve come to a point where there’s always something more that we can do and we can never stop,” he says.

https://www.abc.net.au/news/2018-07-28/rethinking-our-approach-to-death-and-having-a-plan-for-dying/10014582

Yes, there is always another medication we can try. Or another surgery. A friend of mine had pelvic exenteration surgery – this is very invasive surgery I have specifically stated in my Advanced Care Directive I will not have. That is my choice.

Even though I can’t currently ask for VAD ahead of time, I have done everything I can do to take the guess work out of my treatment, should such a time arise. I’ve expressly given examples of treatments I do not want. I’ve even mentioned VAD just in case the legislation changes. As the legislation currently stands, this is the best we can do. I hope, in time, we see more compassionate provisions in the legislation. We should be allowed to specify, well ahead of time, our choices.

There is a two episode documentary on ABC iView, Laura’s Choice, which you may find of interest and comfort. Laura travelled to Switzerland to avail herself of VAD.

Laura Henkel has decided she wants to end her life on her own terms, and describes why she has asked her daughter Cathy Henkel and granddaughter Sam Lara, both filmmakers, to make a film about it.

https://iview.abc.net.au/video/DC1917W001S00

I’ll leave you with Dr Corke’s empathetic words.

Photo credit M Bryson Photography

My Personal Weight Management Under #StayAtHome

Yesterday I tweeted:

I did not expect the reaction! I promised to write in more detail what I am doing to achieve this, so here it is. I want to stress this is what works for me, given my current circumstances. It is really intended for people of similar age and in similarly physically challenging circumstances. While the #StayAtHome situation is common to most of us, of course the knee issue is an added complication. Unlike my recent short videos, this will be a long read, so buckle in folks!

Situation Summary

I have been in self-isolation since March 1. The gyms closed, the pools closed. I am a weight training person: suddenly I couldn’t even do upper body or hydrotherapy. The knee is preventing any lower body weights work or walking. I am also nearly 65. We all know as we get older it becomes harder to manage our weight than when we were 25.

I was terrified of gaining weight and making my knee pain worse. Due to several changes of medications and predisolone off and on over the period in question, I had gained a few kilos during late 2018/early 2019. I have been very successful in reversing that trend, especially once my clinical drug trial got underway, with the suggestion and support of my endocrinologist to adopt the philosophies of Dr Michael Mosley. I’d never known it was considered safe to eat 800 calories a day. I do now! Before you stop reading in horror, I’m not eating 800 calories a day now! But it is a damn good kick start to get you going and I do still apply the macro principles espoused by Dr Mosley.

Comfort Eating

Several responses to the above tweet raised the issue of comfort eating. This is an issue that is exacerbated by isolation, anxiety (e.g. about the current health crisis of Covid19) and boredom among other drivers. A chronic illness patient I know once said to me she stopped comfort eating when she realised she was “eating her pain” – and she didn’t just mean physical pain, she meant emotional pain as well. Once she had that epiphany she was able to stop. She looked for and found other ways to deal with her pain.

I find boredom can be an issue for me, especially when I can’t go to the gym or swim and I am locked away. For me, the recording (discussed below) helps immensely. I can see what I’m eating instantly.

I have no great solution for comfort eating, I am sorry, as it is a bit out of my field of expertise. I would suggest perhaps consulting a psychologist if it is impacting your weight management efforts. Mental health is a critical factor and if you have a chronic illness, in Australia you are entitled to a Mental Health Care Plan. Use it.

Understand Your BMR

Before we even look at food, my recommendation to anyone on a weight management journey is to understand your Basal Metabolic Rate (BMR). This is the number of calories your body burns being alive. Nothing else, just being alive. Our BMR drops as we age. This calculator at MyDr.com.au is the one I use: http://tools.mydr.com.au/tools/basal-energy-calculator

Pop in your details at various ages and you will see the BMR drop. Of course this is a average. If, like me, you are an avid weights person you will have more lean muscle mass and your BMR will be higher. Conversely, you may be on medications that actually reduce your BMR as a side effect. Even so, as a place to start, it is a good indication.

If you do no exercise and you eat more than your BMR, you will gain weight. There is more to it than that if we want to delve into the science, but for our purposes, it is that simple, really. Note well: exercise in this context includes NEAT!

Be very aware though, your current weight may drive your BMR reading up. If your BMR says 2,000 calories a day, you don’t want to be eating that if weight loss is your goal. Try putting your target weight into the calculator – work from that.

Net Calories

If I am exercising in my normal manner, I live by net calories. My calorie target for the day plus what I “earn” exercising less what I eat. When I cannot exercise “properly” as is the current case, I aim for less than my BMR. At the moment I aim for 1,200 calories a day or less, with the odd 800 calorie day thrown in for good measure.

When I fill up my car the fuel tank capacity limits how much I can put in. Unless the car burns the fuel, no more will fit. Humans are not limited in the same way – if we don’t burn it, we just expand to make room (store the fuel).

Record, Record, Record

I cannot stress strongly enough to record your food intake. If you are anything like me, you forget that snack you had at 10 am. Or you don’t realise that SMALL muffin you grabbed en route home from the pharmacy was actually 530 calories! I use My Fitness Pal, there is Cronometer and various other apps out there. Find one that you like.

Recording means measuring. Get food scales. Measure.

Dietary Protein

My next tip is to look at your dietary protein. Are you eating enough protein? From talking to people I suggest many, especially older people living alone, are not eating enough protein. Without enough protein we can feel hungry and snack (usually on carb heavy stuff) unnecessarily.

My interest in dietary protein came about from my own experience. I noticed my protein levels had dropped when I reviewed my My Fitness Pal recording at one stage back in 2017. I was also in more pain from my psoriatic arthritis, although I wasn’t thinking of a causal link. I upped my protein for general health reasons and suddenly my pain levels dropped. Hmmmm, I thought. At the physiotherapist, I picked his brains, “Are you aware of any research around dietary protein and pain levels?”. No, he wasn’t aware of any so I came home and researched. This is one of the articles I found, which I rather like as it is succinct in stating the findings.

Effects of inflammation and/or inactivity on the need for dietary protein

Remember too that a 100 gram steak is NOT 100 grams of protein. It is about (depending on cut, quality, etc) 23 grams of protein. Know your protein sources.

Serving Sizes

All food packets have a recommended serving size. These are guidelines, not mandatory rules. Most bread packets have a serving size of two slices. I do not need two slices of bread under my omelette (see main photo above), I won’t burn that extra fuel.

My favourite high fibre muesli has a serving size of 45 grams. I have 35 grams with 160 grams of high protein yoghurt. I don’t miss the 10 grams, but over a week it adds up to less calories.

Adjust serving sizes to suit your circumstances. When I’m able to lift weights again, I’ll go back to 45 grams of muesli!

Ease of Preparation

Some people love cooking, others do not. Other people have physical challenges around standing chopping up vegetables, for example. Some of us have days where our medical conditions flare. Living alone can result in wastage as fresh vegetables go off before we use them. How I deal with this is frozen vegetables. No, I don’t find them particularly wonderfully cordon bleu – but they serve a purpose. Prepped, pre-measured, 2.5 minutes in the microwave. Here is one instance where I double the serve – as each bag contains two standard serves.

Another variety with chicken.

I’ve found this frozen spinach great for omelettes!

Two blocks of this (about 50 grams) with two eggs. I microwave it per the first half of the instructions, drain and pop in my non-stick pan for a minute or so, pour beaten eggs over. Cook. Greens and protein in one simple meal.

I stick to fresh salad vegetables such as lettuce, cucumber, mushrooms and tomato. They are easier to buy in “as needed” quantities. Of course, as I am in isolation and receiving grocery deliveries, that is more difficult. Another benefit to frozen vegetables at the moment as I’m not dependent on deliveries to have vegetables.

Meal Replacement

Eating the increased amount of protein as discussed above and keeping calories down can be a challenge. I was also told by a friend (I have NOT substantiated this) that in some cultures older people eat very little late in the day, but it makes sense, especially when there are reduced levels of activity.

I have been replacing most evening meals with a protein shake. This brand was recommended to me by a work colleague who is a amateur marathon runner. I chose this product.

I’ve tried various meal replacement shakes and work out protein shakes over the years, but I really do like this one as it is virtually all protein and suits my particular needs well at this time. Once I’m back in the gym, I’ll change to one of their “work out” formulated products and probably not use it as a meal replacement but as a work out supplement.

The cost is $2.13 a serve, which is cheaper than a steak! I buy the large container because it is cheaper per kilo and is delivery free.

Carbohydrates

You will notice not one photo of potatoes or rice. I am a very low carb, healthy fats, high protein eater. I do eat fresh fruit: bananas, peaches, apricots, apples, grapefruit, plums, mandarins. While sugar is the bane of my existence, as it is in everything, fruit has other health benefits. I do limit my intake to two pieces of fruit maximum a day.

Did you know there is 11 grams of sugar in a cup of milk? Anything low fat is often high/added sugar. I tend to triple check the sugar content of anything that is labelled “low fat”. The version that isn’t low fat may actually be better for you.

I found a great low carb, high protein bread that is really nice, highly recommend!

Watch out for “hidden” carbohydrates. This label is a classic example.

Knowing the calorie value of each macro (fats X 9, carbs and protein X 4) my mental arithmetic could not see where the 337 calories was coming from. See the red arrow? Yes, glycerol. 4.32 calories per gram. A whopping 14.3 grams! In the USA it is required it be included in the total carbohydrates. Not in Australia, it seems. Read labels, be aware of possible hidden stuff you don’t want.

Emergencies

Have healthy food you can prepare with no effort if necessary. This prevents grabbing something carb/sugar heavy. I keep four of these in the freezer for flare days. I like these ones, but everyone’s tastes are different. Find ones you like that you can have on hand for emergencies. These two are usually on special for $4.00 each, other varieties may be dearer.

I also have tinned salmon which requires no preparation or cooking. Never run out of eggs!

Treats

Yes, treats. Gotta have treats! At nearly 65 and not aiming to appear on the cover of Vogue anytime soon, I’m not going to be a martyr.

At the moment I am alternating between two treats I allow myself, ONE treat a day.

20 grams of this:

or 67 grams of this:

The 20 grams of chocolate is basically 50% sugar – not really a good choice, I’m eating 2 teaspoons of sugar. But we have to cut ourselves a little slack!

The ice cream (comes in chocolate too) is a much healthier choice as you can see from the label. This is a serving (on a bread and butter plate).

If I am out going to the doctor or the pharmacy I may well indulge in a skinny flat white and a sweet treat – but that would be once a week at the most. More likely once a month under our current #StayAtHome rules and doctors doing telehealth!

One-liners

  • Drink plenty of water – helps you feel full
  • Watch how many coffees you have – can be 50 calories an instant coffee (4 grams raw sugar)
  • Get enough sleep (lack of sleep affects cortisol levels)
  • Eat breakfast
  • Eat slowly (mindful eating is a thing)
  • Eat ice cream with a teaspoon
  • Use smaller plates, the meals I have pictured here are on my entree plates
  • No or at least very minimal alcohol – empty calories
  • No soft drinks (unless used as a small treat)

In Conclusion

I’m reiterating: this current regime of mine is for a particular set of circumstances: minimal activity, isolation, age, pending replacement knee surgery (so very important I not gain weight), pain management requires weight management.

This is certainly not how I eat when I am weight training three or four times a week and swimming two or three times a week. It would not be how I would eat if I was 25.

Some of my weight loss this last month will have been muscle, which concerns me, but there is little I can do about that at the moment.

ALWAYS check with your health care professional for your specific circumstances!

Please ask questions in the comments, as anything you are wondering about may be a question other readers have as well.

 

Ditch Your Handbag!

Even for well people, this situation is not good. For many people with a chronic condition (perhaps a musculoskeletal condition), it is even worse. It is vital we pay attention to our posture and our body balance. By body balance I don’t mean standing on one foot (although that IS a very good exercise) I mean ensuring our muscle strength and length on each side of our body is balanced, that our chest and upper back muscles are balanced. For every push exercise, we balance with a pull exercise. Rock hard quads are great, but don’t ignore the hamstrings!

What has that to do with handbags? Look at the photo. If I walk around too often like the middle image, what do you think might, over time, happen to my shoulders? The muscles on one side will be over worked and I may develop a postural abnormality. This can lead to pain and most of us do not want that.

If you rarely use a handbag, fantastic. However if you are travelling to and from work on public transport five days a week, then walking around town (getting incidental exercise) at lunch time, the hours add up.

Even if you do not yet have a condition to manage, this handbag on one shoulder habit is still not a good thing. Slinging a backpack on one shoulder is exactly the same effect. Not a good thing. Because we are creatures of habit, we do tend to use the same shoulder each time. If we swapped it around evenly, it might not be so bad.

You may keep a pretty handbag for social events. Or a businesslike one for job interviews. Other than that, ditch the handbag and invest in a backpack. Or several. There are a wide variety around these days and many look remarkably like handbags or can be disguised as one quickly if necessary.

There are even ones that can be brought around to the front for access without taking them off – very nifty.

If you do not have the shoulder mobility to use a backpack and you carry a handbag, remember to share the load between arms.

Short and sweet, just my tip of the day!

 

Incommunicado Quads and Walking Sticks

I know I’ve been incommunicado – unfortunately the quads in my right leg also went silent – so silent I couldn’t move my right leg. At 1 am on a Friday morning, not knowing what was wrong, I’ll admit to being a little panicked.

This was a few days after I’d had some very minor, completely unrelated surgery, so it was a bit of a busy time. My knee was already playing up then, as the hospital had helped me into a wheelchair from the taxi on arrival for admission.

Initially I thought I’d just been lying funny and my leg had “gone to sleep” and would recover in a few minutes. When it didn’t, I was a little more concerned. I couldn’t actually make it out of the bedroom – every time I tried, using the windowsill as a walking stick, then swapping to the bed frame – I’d get halfway across the end of the bed and feel SO nauseous I’d have to lie down again. Took me three or four attempts to actually get out of the bedroom. The doctor later told me this would have been due to pain, yet I do not recall any pain, I just could not use my leg. Well, yes, it was very painful if I put any weight on it, but I was studiously avoiding doing that – or so I thought!

To cut a very long story short, I dragged my poor daughter out of her bed, a 40 minute drive away, to take me to the emergency department. By 10 am I could lift my leg about 1.5 centimetres off the bed in ED. By noon I could bend it 90 degrees! Yay! I did not want to be admitted because the following week I was starting a clinical drug trial and intervention at this point might very well have excluded me. More on the drug trial in my next article – it is FANTASTIC.

So I was allowed home with a prescription of rest and elevation. The knee was rather swollen. Something else I didn’t need. It was the swelling in the knee that cut off my ability to use my quads. I should have known: earlier in the week I’d used an ice pack. I remember thinking “This ice pack isn’t very cold” then popping in on my left knee for a moment and thinking “This ice pack is FREEZING”. Clearly there was already a bigger problem brewing than just a sore knee.

My quads shutting down had nothing to do with my psoriatic arthritis. This was just a new problem arriving with very bad timing.

An MRI later and the results were in: “significant osteoarthritis, particularly behind the patella”. Oh, great – just what I need – not.

I got one of those awfully boring grey hospital sets of crutches so I could get around. Of course I thought I’d only need them for a day or two. Umm nah. I did manage to get down to one crutch, but I hated the grey, the cuff didn’t fit properly over my denim jacket and I was about to go to a conference in Sydney (more on that in a later article too). So I bought a very pretty walking stick (see above). If I had to use one, I was going to at least be semi-stylish!

Second problem was how to rehabilitate this knee. My rheumatologist advised (just as well, really) exercise to build my muscle strength back up. With the challenges I’ve had since January with medication changes and the resultant psoriatic arthritis flare, my exercise had taken a temporary back seat. It doesn’t take long to lose strength, especially as we age! I am reasonably sure this contributed to the osteoarthritis letting me know it was not at all happy with me. In order to make 110% sure I was doing the right thing, I enlisted the help of an exercise physiologist, Jack. Yes, I’m a personal trainer, but in this specific case I wanted to triple check my approach was correct. Jack has higher qualifications than I do and I do not hesitate to call in the big(ger) guns if necessary. He did get me to start a little slower than I might otherwise have done (a good thing), but by the second appointment he essentially let me loose. I did pick up some nice new very specific rehab exercises from him and am very grateful for his guidance and expertise.

I retired my walking stick on August 29th after six weeks. Yesterday I was back on the leg press, high reps, low weights. VERY low weights. I did one set at 40 kgs and two sets at 60 kgs. I was doing 160 kgs last year! This picture won’t mean much to readers, but to me it was getting my mobility back!

I’ve also been doing hydrotherapy. I’m “allowed” to do as much hydrotherapy as I like. Jack was thrilled I was doing squats in the hydrotherapy pool, I was thrilled he was thrilled with my adaptation! I do them out of the pool as well, but in the pool is good, especially with this darn knee.

Back in 2014 I’d had a Synvisc shot in my left knee (which was great) but of course that strongly indicates that left knee is not all that wonderful. It also indicates (although I didn’t have an MRI of the right knee back then) that perhaps both knees were a little under the weather back then. I had an arthroscopy on this right knee many years ago and until now had no further issues. Well, now I know I have two knees requiring a little extra care and attention. With the extra load the left took while my right was on strike, by the time I retired the walking stick, my left knee was reminding me it is no longer a perfect 20 year-old knee. I threw my hands in the air and applied the rehab exercises to both knees.

I’m lucky – I have been able to retire the walking stick. Using one is like driving, it takes a long time before it becomes second nature. I felt I was on “L” plates the whole time. I’d drop it when trying to juggle bag, stick and anything else I happened to have – such as a morning coffee. Getting on and off trams was a challenge but at least I was no longer one of the invisibly ill and people jumped up to give me the special needs seats. I now had a badge. I never seemed to be able to lean it anywhere without it falling over – poor Cleo (my cat) nearly got whacked by the flying walking stick several times as it fell to the floor. I felt I just could not get it right. I also felt SO SLOW.

I have a new appreciation and understanding of those who use mobility aids permanently or semi-permanently. In the last week, I carried it with me, but used it less and less as my knee recovered – however then people look at you in very odd ways as you are carrying but not actually using a walking stick. I never thought of getting a folding walking stick – lesson learnt!

That particular situation is much better addressed by Kristen Waldbieser, who does not need her wheelchair 100% of the time.

Between minor surgery and the above, I hope you forgive me for being very quiet. I’m going to make up for that in the coming days. I have a drug trial and a conference to write about! Stay tuned!

No Remission for Me – At Least Not This Time

My experiment didn’t pay off. Am I sorry I did it? Not really, because knowing me, had I NOT done it, I would have always wondered. That is a very personal characteristic: it would not apply to everyone! While I am a firm supporter of modern medicine, I don’t like taking any more medications than absolutely necessary – had I not done that three month wash-out, I would have always wondered was I taking medication when I didn’t need to. Now I know! I need a medication!

The one thing I have learnt is this autoimmune arthritis, currently considered to be psoriatic arthritis, has a tighter grip on me than I thought.

So what happened? I was fine until about two weeks before the three month wash-out period ended. First I got a sore toe on my right foot. I thought nothing of it as I had been wearing in some new shoes plus it was possible I’d stubbed the toe without realising it. Then I got a VERY sore brachialis origin – thought maybe I’d strained myself in the gym, but couldn’t quite figure out what I had done, given I am so careful. Plus my right shoulder was tiring when I was swimming.

A week before I was due to see my rheumatologist, my left foot started swelling. Right at the moment I have only one pair of shoes I can wear and that is only because they are sandals with adjustable straps! These are my feet compared after a day at the office.

Today, I have a sore toe on my right foot, a swollen left foot, my whole right shoulder and upper arm are causing me issues and the discomfort is radiating up my neck. My fingers are a little stiff, but nothing too bad. My knees are grumpy, both of them. I’d being trying to avoid prednisone, but I’ve capitulated. Only a small dose though, to tide me over.

On a good note, my skin and nails look fantastic!

Two weeks ago I started methotrexate. Too soon yet to feel any improvement: so far no side effects. My dermatologist will be very happy – he wanted me on it straight away.

I am sad I’m back on medication, but I am grateful there are medications that will help. This is my third medication since the start of 2015. I am hoping this one will improve the fatigue and the brain fog, both of which have always been a bigger problem for me than actual pain (until right now, that is).

The brain fog is partly why I haven’t been writing – thinking is actually a struggle, particularly at the moment. Aside from that, I was wary of writing that I was fine until the jury was in at the three month mark. I knew I was taking a risk and did not want to sound celebratory until I knew whether I had anything to celebrate!

Will I do it ever again? I think, given my age, probably not. If I can get the brain fog to lift, I’d be ecstatic, as it is the one symptom that I find really soul destroying. I’m  good at managing the level of pain I experience, it is the brain fog that drives me nuts. I used to be an avid reader – now I am not simply because the combination of fatigue and brain fog makes it a challenge rather than enjoyment. Mind you, it is all relative I suppose. I was speaking to a contact the other day, bemoaning the cognitive impact. The response was something along the lines of, “Well, I’m glad I didn’t have to debate you before you got sick, you’re sharp enough now!” Maybe they were just trying to be nice. But us sufferers, we feel the loss very keenly.

The fatigue is helped by exercise, but with swollen foot and dodgy shoulder, I’ve been instructed to rest for the moment. This is SO not me, I’m struggling with abiding with that instruction. Mind you, it is difficult to go to the gym when my runners don’t fit!

In another two weeks I can hope for some improvement. Regular blood tests are again the order of the day, something else to fit into my schedule.

I have four weeks of UV B light therapy to go. Although it only takes a couple of minutes, it does require careful scheduling and at three times a week I will be glad when it is over: I won’t have to dash from work to the dermatologist at a specific time. A little flexibility will be restored!

Yes, I’m disappointed, but I’m happy I had the opportunity to try. Many people are too unwell to even consider such a trial. The fact I could, I am taking as a positive.

Now, just let me get back in the pool!!! I miss my swims!

I Am Medication Free! For Now, Anyway……..

Right now I am medication free! No, I have not forsaken the wonders of modern medicine in any way shape or form, but in careful consultation with my rheumatologist I am taking nothing at the moment. How long this will be the case, I am unsure: we will reassess in February. If anything goes belly up, I’ll just make a phone call.

NEVER CHANGE YOUR MEDICATIONS WITHOUT YOUR DOCTOR’S APPROVAL.

Why is this happening? The medication I was on, my second inflammatory arthritis medication, was GREAT for the arthritis. However, it is considered not so great for my skin. This is my left arm a couple of days after the biopsies. This is the worst patch, always has been the problem area. Ignore the scar circled in black – that was the result of having a run-in, literally, with a broken fire extinguisher. The area circled in green is one of the biopsy sites.

Why is my suture not covered? Well, the steri strips started to come off, so I soaked them off. I can not use bandaids of any sort any more, my skin is so fragile – I remove them and the skin comes with them. Rather nasty, so I just don’t go there. It is bandages after bllod tests these days.

About two years ago we investigated my skin and it was then diagnosed as photosensitive eczema. It looked a little different back then. This November I have a completely different diagnosis. This does not mean the original diagnosis was incorrect – things change. In 2016 I was on different medications. Around the time of that first diagnosis I changed my arthritis medication and early this year (2018) I ceased taking medication for my hyperthyroid, having undergone radioactive iodine treatment. So a few changes in the two years.

My skin diagnosis now is atypical psoriasis, believed to be exacerbated (considerably) by my arthritis medication. My dermatologist discussed the matter with my rheumatologist and off the medication it is! I am starting UV B light therapy in the new year – can’t wait! I say atypical because it looks more like subacute cutaneous lupus erythematosus (SCLE) (per dermatologist) than psoriasis, but the biopsies, thankfully, told a different story.

My nails, which usually readers never see due to my passion for polish, look like this. Not all the time, it comes and goes, but the little fingers are particularly unhappy at the moment.

The next medication in line for me, agreed to by my dermatologist, rheumatologist and gastroenterologist, is methotrexate. By the time I saw my rheumatologist, I had been medication-free for a month and I don’t feel too bad at all. I asked about the possibility of seeing how I go without any medication. Other medical professionals are investigating some other symptoms I’m experiencing, some of my blood tests have been a bit erratic – it might be easier to isolate a cause if I’m medication free. That consideration aside, the less medication the better makes me happy. Methotrexate only takes four weeks to “kick in” and I’m certainly not going to be a martyr about it – if I feel I’m going downhill, I’ll be in my rheumatologist’s office very quick smart. I have backup medications in case I flare.

As I have to change medication anyway, it is an opportune time to try and see what happens. My arthritis related blood tests have improved considerably since late 2014 when I was diagnosed.

So how am I finding it? My feet have niggled at me a few times, both my knees are slightly grumpy at night if I walk too much during the day, the base of my thumbs hurt a little bit with certain grip actions (think holding my drink bottle to unscrew the top). If I have a really busy day I do stiffen up at night – but then that is not exactly new, I don’t think it has gotten worse – it is also more likely related to the degenerative changes in my lumbar spine than the arthritis. Other than that, I can’t complain. I swam 1,100 metres today, the first time I’ve managed a swim session over 1,000 metres for quite some time. I did 40 minutes strength training yesterday, my quad strength is actually improving. I did 9,000 steps (accidentally) on Thursday with no ill effects.

My biggest concern is my fatigue/lethargy may return. For me, that was a major problem. Settling the thyroid helped, of course. Now my bloods are indicating my parathyroid is not behaving – endocrinologist appointment in January to try to get to the bottom of that.

The BEST part is I can go out in the sun – sensibly, of course. I’ve spent two years avoiding any sunlight because of my skin, slathering sun cream from head to toe: slip, slop, slapping to within an inch of my life. Yes, I still have to be Sun Smart, but at least I can be normally Sun Smart now instead of paranoid! I also feel better psychologically: I felt as if I was a constant Seasonal Affective Disorder patient.

I don’t know if I will stay free of medication for the arthritis. I see this as an experiment. I do seem to be susceptible to the side effects of medications so if I can stay as healthy as I am now, I’ll be happy. Any deterioration, I’ll be in my rheumatologist’s office. It takes a while for the drug to wash out of one’s system, so I won’t really know for three months – I’m only a third of the way through.

I am very grateful to my specialists for allowing me to try this. It would not be an ideal option for a lot of patients, I know. I am certainly not recommending what I am doing and would definitely NOT be doing it without having discussed all the pros and cons with my guardian angel doctors. I am monitoring myself carefully.

The physical fitness and strength I’ve slowly spent four years building back up has certainly helped me manage my condition so far, but no, there is no guarantee by itself it is enough.

We shall see – wish me luck!

Tiger Pacing

Pacing THRU, Pacing UP, Pacing DOWN

Pacing is very important in the management of chronic conditions, including chronic pain management.

A year ago today I wrote Pacing for Beginners, an article that essentially talked about pacing UP, In other articles, such as Beat the Boom Bust Cycle, I have referred to pacing, in the context of pacing THRU. What’s the difference? Isn’t pacing, pacing? Well, not really.

We need to understand the difference so we don’t get stuck doing one, when in fact the other or both may be more beneficial for our long-term condition management. We risk pacing DOWN.

Pacing THRU

Many chronic condition patients suffer fatigue. The degree will vary from day to day, the severity will be different for each patient. Natalie van Scheltinga has a very good description in Fatigue In Chronic Illness Explained, using “The Battery Analogy”. Some people find this analogy works better for their situation that the oft-cited Spoon Theory. Both are good illustrations of how the fatigue can affect one’s daily life.

We are all different. Both these images below are daisies, yet one has WAY more petals than the other. Think of each petal as a unit of energy. We could make this really complex and compare the size of each unit of energy, but let’s not delve that deeply today. Most chronic illness patients have a certain number of petals they can use per day. Increasing the number of petals, if possible, is a good thing.

White Daisy

Pacing THRU is about getting through the day with the energy we have. Yes, we DO have to be careful not to go overboard. Even now, as healthy as I now am, I am still technically “sick”. I know that a two hour commute to work would not be something I could do on a regular basis. On the days I do my strength workouts, the strength workout is the only major “task” I do that day. I am playing around with my routine currently, more on that later.

Pacing UP

Pacing up is used in clinical pain management settings. It is, of course, also used in sports, personal training and a host of other activities. I paced UP, over a four year period, from 5-minute walks several times a day to whole body strength work-outs and swimming. No-one runs a marathon without building up to it.

Pacing UP is not just about being able to walk further than yesterday or regaining the ability to sweep the floor. It is also about energy levels. As we improve our physical endurance and strength and reduce or eliminate our pain, we sleep better, energy levels improve, functionality improves. Our overall quality of life improves.

It should be noted pacing UP does not always involve movement. For example, if sitting causes pain, pacing UP may be used to extend the body’s tolerance to sitting. For the purpose of this discussion today, I am referring to movement.

Pacing DOWN

If we only pace THRU and don’t have a strategy in place to pace UP, we run the risk of pacing DOWN. When we pace DOWN we run all the de-conditioning risks I repeat regularly (some may say I repeat ad nauseam). We will get sicker, likely experience more pain, lose more functionality.

de-conditioning

Our quality of life will deteriorate, we risk losing our independence, our freedom and possibly our financial stability. Pacing DOWN is not good. As with pacing UP, pacing DOWN happens gradually. We may not even really notice it: until the day we realise we can’t do something we used to be able to do easily or we notice our pain has increased. Yes, for some this will be because of disease progression – for many others it will be the result of inadvertently pacing DOWN.

We are a little delicate, like the dandelion seed head. Remember as children blowing them? It doesn’t take a lot to blow us away either. Yet we are also stronger than we realise. Bring that strength to the fore, use it.

Dandelion

Pacing THRU and UP

It is a recipe. A lot of THRU and a little bit of UP to start. Mix gently and simmer over a low heat.

Most chronic illness patients will need to do both. Initially, more THRU than UP. The plan should be to reach a point where UP become easier and THRU becomes less of a concern. DOWN? Avoided totally.

Practical example from my own experience. For some time my routine has been two strength workouts a week, one  swimming session and daily walking. I’ve been pacing UP within those sessions; increasing weights, increasing swim set metres. This is where balancing UP and THRU comes into play. I have a target number of steps for the day, at the moment 7,500. When I am in the gym, I still clock up steps. When I am in the pool, I don’t, even though 1,000 metre swim is considered roughly 4,000 steps. So, if I were to increase my total swim use of energy, should I still aim for my 7,500 steps? I’d have paced UP my swimming, but I would NOT have paced THRU my day and run the risk of draining myself and paying for it the next day. Then I would possibly actually drop my activity level the following day, which is not to my long-term benefit. Sure, one day here or there is not a massive issue, but if a pattern develops, it becomes a problem as it can lead to pacing DOWN. Yes, my ultimate aim is to have both: increased swimming distance AND my steps target. I have to balance getting there.

The appropriate balance needs to be carefully planned out for each person, depending on their particular situation, conditions and degree of condition progression. Sometimes we can feel discouraged. Giving up, giving in, is not an option.

SMART Goal Setting

It is important to set goals to measure progress when pacing UP. Please click through to Make 2018 YOUR Year for SMART Goals, where I outline how and when to use goal setting to assist you. I know 2018 is drawing to a close, but the strategy remains the same!

I am looking at new goals for myself for 2019. That’s why I am playing around with my routine. When I moved from one strength session a week to two a week, I needed to be careful to not overdo any particular day. I increased my total for the week, but each individual session is less that my original single weekly session. If I increase my swimming, how much do I adjust my step target on those days? What will work for my body? So I’m trialing options at the moment. I’ve reached a stage of improvement where I can do that.

This article is of a general nature and does not constitute specific exercise advice for any individual person. For patients with particularly complex or advanced conditions, this may not be appropriate. If in doubt, seek professional guidance.

Contact me for a confidential chat as a starting point to pacing UP.

Main image “Pacing Tiger” Heather Ruth Rose/Shutterstock.com

Further Reading:

4 Resilient Ways to Cope With Chronic Pain – Huffington Post

Doctors and Exercise – Limberation.com

posture

Is Your Posture Exacerbating Your Pain?

What exactly IS posture? When I was a young girl we were taught “shoulders back, tummy in” and a lady NEVER looked down when descending stairs. We learnt to walk with a book on our heads. I am sure many of you remember similar lessons.

Good, or ideal, posture is when there is a state of muscular and skeletal balance which protects the body against injury AND/OR the progressive development of irregularities. More on that in a bit.

Faulty posture is when we sit or stand or move in such a way that we create a faulty relationship between various parts of our body, primarily musculature, which places undue/increased strain on some muscles and not enough effort is required of other muscles. This leads to imbalances: some muscles become weak, others may become tight. Some may become stretched, others shortened over time. Pressure can be applied to other soft tissues causing additional pain or discomfort or restricting function.

What all this can lead to is a worsening, or progression, of any musculoskeletal issues we may be having. As regular readers will be aware, I have several back issues, the reason I converted to kyBoot shoes in the first place.

It may not be chronic conditions that cause faulty posture. It may be chronic habits! The most common such chronic habit is sitting at a desk all day. Office workers can develop upper crossed syndrome (UCS). The person may end up with permanent forward head, increased cervical lordosis, rounded shoulders and thoracic kyphosis. This all involves tight/shortened upper trapezius and levator scapulae and six other muscles in the region. Seven muscles, including serratus anterior, rhomboids and lower trapezius all weaken. Not sounding good is it?

How are you standing?

Injuries that may result include headaches, bicep tendonitis and impingement of the rotator cuff. Chronic habits can lead to chronic conditions! It worth noting the rotator cuff is actually made up of four different muscles: infraspinatus, subscapularis, teres minor and supraspinatus.

What we tend to do is adjust how we sit, stand or move to relieve a discomfort or pain we may be feeling. This is called guarding. While this is certainly logical in cases of acute injuries, for example, if we have broken an ankle, in situations of chronic conditions like my back, guarding may not be so helpful at all over the long term as it can reduce the muscles’ ability to support the very structures you need those muscles to be strong enough to support. The muscles of the core and posterior chain support the spine for example, but if I don’t stand, sit and move correctly, over time those muscles will not function as well and the back pain I will experience will get worse. I know – I’ve been through it!

Personal trainers, fitness coaches, allied health professionals such as physiotherapists and osteopaths can all assess posture. A fitness professional may refer a client to an allied health professional for additional assistance if deemed necessary, or may prescribe specific exercises or exercise technique adjustments to help strengthen weakened muscles and improve posture.

What, as an individual can YOU do to help yourself when the professionals are not around to monitor your posture? Learn to be your own monitor. Make sure you know what good posture not only looks like, but what it FEELS like. I have a very good eye for detecting postural abnormalities in other people, yet I have had to focus really hard on detecting the same in myself. I know where my ankles should be in relation to my hips, where my ears should be in relation to my shoulders, where my shoulders should be in relation to my hips. But I can’t always see myself and we slip into old habits easily.

Habits are hard to break. We do a lot of life on auto-pilot: drive the same route home each day, walk to the train station without thinking about it. Our posture is also often a habit. We have to work hard at developing a new habit.

Knowing it and doing it can be two different things. When out walking, I will monitor my reflection in shop windows for example. I had, over the years, developed some degree of kyphosis and rounded shoulders (I was a desk jockey for so many years). As a result of the back issues I have, I had also developed a tendency to lean slightly forward. These aspects of poor posture are easily detected in a reflection. I consciously correct myself.

What if I am in the park and there are no shop windows? If I apply mindfulness to my body I can feel myself not standing tall, I know I do not have a neutral spine because I am leaning forward. I make the effort to correct my posture.

Fair warning: when you start doing this, it is actually tiring. The muscles have become weak over time and it does require physical effort to hold yourself in the correct position and keep walking. Just as those muscles became weak over time, they WILL regain strength over time if you persevere.

Yes, you may feel a twinge of pain as well as you straighten up – yet that passes and you actually think, “Gee, that DOES feel better!” A caveat on that – you may need to do strengthening and corrective work before you get to that point, depending on your current situation.

While a fitness professional or allied health professional may have prescribed daily exercises and these certainly will help, being conscious of your posture throughout the day will see results achieved faster.

This is not to say I never have back problems any more. I have degenerative structural changes in my lumbar spine. If I have a day where I completely overdo things, or do something I shouldn’t (such as sit for too long), yes, I will still end up stiff and possibly sore. With the right stretches, some walking and maintaining my strength workouts I now bounce back quickly without any need for pain medications. My kyBoot shoes have been a major component of my personal tool kit over the past twelve months.

I highly recommend consulting with a professional who can assess posture and prescribe exercises that will focus on the problem areas. Increasing or maintaining functional movement needs a long-term comprehensive program including footwear, stretching, appropriately targeted exercises (including strength work) and constant awareness to prevent lapsing into old habits.

For desk jockeys sit-stand desks are great, but be aware research is indicating neither sitting NOR standing all day are good for our bodies, there are health risks in both situations. Movement is the best medicine. I have a sit-stand desk in the office and I am also lucky in that I walk around a large campus quite a bit. Between alternating sitting and standing, and the walking, I move a lot during an office day. Not nearly as much as a nurse or a policeman on foot patrol, but more than many desk bound people.

Ensure you transition between sitting and standing with correct ergonomic positioning of your desk (and chair). If in doubt, ask your Occupational Health & Safety team for advice. The University of Western Australia has good reference material too, including a page on sit-stand desks.

This is an edited article originally published on the kyBun website.

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