Flaring

For the uninitiated, flares are what we chronic condition people call the times our condition (or conditions) decides to remind us it exists, usually in no uncertain terms.

Barb, who, like me, is a complex comorbid patient including psoriatic arthritis, sums up flares succinctly!

The unjoys! The phrase “Oh the joys!” is in common usage, the implication being something is not actually so joyful. But I love this new word. For me, it hits a home run.

I had one yesterday. While the experience is fresh in my mind, I’m writing about it. We tend to get used to them, they become just part of our new way of life, while healthy people can find the flares of others confronting.

If you are friend, family or colleague of a chronic condition person, or you are new to this chronic world, hopefully I provide some insight to “what happens”. Everyone is different, what I describe is specific to me, my conditions and my current circumstances, but should give readers a feel for flares generally. Flares can be long or short: once my right wrist flared for about eight hours, then was fine. No rhyme nor reason.

Yesterday’s flare was different. For a start, it was whole body, not just one joint.

I now realise it started on Wednesday. I was driving to the office and my upper arms were sore when dressing and driving. Sore upper arms usually means shoulder inflammation. Nothing too bad, but I did take panadol osteo to see me through the day. Driving home from the office that night I felt nauseous and sleepy and nearly drove through a red light. Not good.

Thursday was a little worse, more areas were sore. I was WFH that day, so I managed. Even my total knee replacement scar felt tight, stretched and tingly. This was a new thing. The joints at the base of my thumbs were sore. My right (unoperated) knee was painful. My right hip was grumpy. You don’t need the whole list!

I woke up Friday morning in a full flare. Not only did I have many sore bits, I had no energy. I had to work, because…. deadlines. At least I was working from home though. No meetings scheduled. I certainly would not have gone into the office, but I felt I could manage the most important tasks in solitude at home. I resorted to panadol osteo and a stronger pain med to get me through the day – I hoped.

Yesterday is the first time ever I have worked in my dressing gown. I am the sort that puts on the lippy and mascara every day, working from home or not. For me to not even get out of my dressing gown is an indication of how crap I was feeling. Healthy people reading this may be horrified at this admission – chronic people will be nodding their heads and thinking, “Oh, yes, know that feeling well.” I did 1,172 steps for the day, between my office and my kitchen mostly.

It is very hard to explain how awful it actually feels. I liken it to possibly feeling as if you have run a marathon – at least that is how I envisage a marathon runner may feel at the finish line. It is only the start of the day, but you feel done already. Like, literally, DONE! That’s before any pain is taken into account. Or maybe the old “run over by a truck” phrase is applicable.

I did manage to get through the work day, almost – I finished slightly early. I doubt my productivity was any way close to normal, but I got some important deadlines met. I will probably work a few hours this weekend to catch up on other tasks. If at all possible DO NOT DO THIS! If you are flaring, REST. I’m setting a bad example here, I know that – but my example also underlines the fact sometimes we are caught between the devil and the deep blue sea.

After I finished work I sat in an armchair and my lumber spine decided to be excruciating. It had, I’ll admit, been building as the day wore on, now it was awful. No idea why – my lumbar spine hasn’t been a problem since 2017 (except for changing the bed linen, that irritates it). Pain medication was required, most definitely. Then, I got stomach pains. My eyes were dry and irritable. Like, what next?

This morning I woke up feeling absolutely fine! Made myself a lovely cinnamon rolled oats and pink lady apple breakfast, have been for a 1.6 kilometre walk, had a coffee at my local café. After lunch I went to the gym for a strength training session. The only slightly sore bits are the joint at the base of my right little finger and only if I hyperextend it, plus my soon-to-be-operated on toes are a bit off (but that’s understandable). I have energy, I feel perfectly fine.

The flare is over, just like that. Gone.

What causes flares when we are on a stable medication that is working and we are doing all the right things (eating properly and sleeping, hydrating, exercise)?

I will never forget my rheumatologist saying to me in late 2014, “Get the stress out of your life.” Great advice, but easier said than done. While the evidence is pretty conclusive that stress exacerbates many conditions and causes flares, we still have to live life! Earn money to pay the bills.

If I stand back and look at what has been happening in my life during the last few weeks there are several factors that alone may not be a problem, but the culmination of the stress of each has resulted in this flare. If you are flaring more than usual, take a look at everything that is going on in your life in the time period preceding the flare. In my case, right at the moment:

  • Pending surgery, with a late change of surgeon
  • Late change of the actual surgery procedure (extra stuff)
  • Teaching a relief staff member to do my role while still doing my role
  • Usual work deadlines
  • Fitting extra pre-op tests into my schedule
  • Mountain of pre-op paperwork
  • Lack of exercise due to work hours and therefore internal battery depletion
  • 42 minute phone call to Medicare – even things like that add to the stress load
  • I’d let my dietary protein drop while distracted with the above concerns

There is stress related to each of the above. Any one item alone is probably not an issue: add them all up and the body goes “What are you doing to me????”

Realistically we can’t avoid these life stressors. We can’t necessarily spread them out over time to minimise the impact on us, sometimes they just all come together. I haven’t really flared for years. You might ask what about the knee surgery, did I flare then? No, but the list was smaller then. No late change of surgeon, no late change of proposed procedure, I wasn’t working at the time so no work-related pressures. I was getting exercise. Sure, I was unemployed and THAT alone is hugely stressful, but I was able to mentally put that on the top shelf out of sight while I concentrated on the knee. I knew the knee rectification was important in order to be able to get a job – I prioritised.

There is no way I could have avoided the culmination of the above stressors, it is just the way life has played out over the last week. I saw the new surgeon on Thursday, had to digest his unexpected news about what needed to be done, fit in an MRI on the Saturday, phone consult and decision on Tuesday, flare started Wednesday, Friday full conflagration.

Surprised I feel so fantastic today after feeling SO bad yesterday. It really is like getting into a brand new car: today I am driving a brand new car! Yet that is what flares can be like and why it can be hard for healthy people to understand or, worst still, easy for assumptions to be made about “it is all in your mind”. No, it isn’t: it is what happens physically.

If you are friend, family or colleague of a chronic person, including healthy looking chronic people, please be compassionate. Be supportive. We don’t like these flares, we don’t have them to inconvenience others!

If you are a chronic condition person, please share any advice or your experiences in the comments.

We Need Personalised Numbers!

2,000 calories. 10,000 steps. These numbers float around and almost become related: subconsciously there can be a belief that if we do 10,000 steps a day we’ll be fine eating 2,000 calories a day! Will we?

2,000 calories a day is as much a myth as is the 10,000 steps a day. While there is always the caveat that the 2,000 is an average recommendation for the average person, etc etc, it is the 2,000 number that sticks in people’s minds.

Based on these rather wide, and self-reported, ranges, some pretty loose rounding happened, and the number 2,000 was settled on for a standard. In other words, not only was the calorie standard not derived based on prevalent scientific equations that estimate energy needs based on age, height, weight and physical activity levels, but the levels were not even validated to ensure that the self-reported ranges were actually accurate.

US News
From Samsung Health app

The 10,000 steps originally came from a marketing campaign.

The magic number “10,000” dates back to a marketing campaign conducted shortly before the start of the 1964 Tokyo Olympic Games. A company began selling a pedometer called the Manpo-kei: “man” meaning 10,000, “po” meaning steps and “kei” meaning meter. It was hugely successful and the number seems to have stuck.

BBC .
Garmin Connect app

Readers who know me on social media know I am very big on getting my movement every day. This website originated from my personal dedication to Movement IS Medicine. So am I against pedometers? Not at all, I highly recommend pedometers. Just forget about the 10,000 steps a day.

Let’s look at each of these aspects of our lives separately. First, the calorie conundrum.

2,000 Calories?

My favourite illustration is the car fuel tank versus the human body. My car’s fuel tank capacity is 60 litres. No matter how hard I try, I can’t put more than 60 litres of petrol in that tank. My body? Ohhhh, I can consume as much fuel as I like. I would just keep expanding to store it all!

I have several factors at play:

  • I’m over 65 – age reduces our basal metabolic rate
  • I’m short
  • I have a chronic condition which limits my fuel burn
  • I’m on medications – medications can affect metabolism.

It would take me an hour of weight lifting in the gym on top of my three walks a day and 7,500 total steps to burn slightly over 2,000 calories a day. My usual burn would be 1,800 on a good activity day. On that basis, if I consumed 2,000 calories a day I’d be storing 200 calories a day. A rule of thumb is one kilogram of fat on the body is 7,000 calories, so I’ll let you do the maths on that. Yes, I lift weights and I walk, but not at the intensity required to be building too much lean muscle with that extra 200 calories a day!

In the image above from my Samsung Health app 1,352 calories a day is recommended for me given my age, weight, height and gender. It doesn’t know about my medical conditions or my medications – if it did, it might recommend less! That is 648 calories less that the 2,000 number that gets thrown around with abandon.

My nutritionist recommended 1,400 a day for me, just for comparison.

Everyone is different and we need to tailor our intake for our particular circumstances and output (burn). We also need to be very careful about what we eat as we have less calories to “fit in” the needed nutrients. For example, I aim for 1.5 grams of protein per kilo of body weight per day. The extra protein chews into my calorie allowance.

Those of us with chronic conditions that have a boom/bust aspect do not have the luxury of “burning it off tomorrow” either. We can’t “do extra” or we end up with a flat battery. It is all interwoven.

10,000 Steps?

I aim for 7,500 personally, at this time. A pedometer is a good way of measuring how much we are moving. It is not the number itself that is critical, it is the consistency. Not moving leads to de-conditioning which is not what we want as it has negative impacts on our bodies.

de-conditioning

A pedometer is also useful when it comes to calculating our pacing up. It is an indication of what we have done and therefore helps us calculate what our 10% increase target is. It doesn’t matter if the number is 2,000, 3,000 or 8,000. It is the relatively and consistency that matters.

I talk about steps as part of my movement regime because it is what I and many other people use. There are, of course, also many chronic condition patients who use other movement modalities. The underlying premise remains the same.

Tracking and Recording

I track and record because let’s face it, even healthy people forget they had a muffin at morning tea. Add cognitive impairment on top of that and it is easy to forget what we ate during the day. I’d be hopeless if I didn’t keep track. With only 1,400 calories to play with, I need to make sure I don’t accidentally eat 2,000!

The same with activity/movement. It is easy to think we moved more than we have and over time we find we’ve paced down unintentionally instead of UP. Our pain levels may increase as a result of less movement and more weight. Not what we want at all.

Personalised numbers are needed. Know our BMR, know our limits, work out our personal parameters and targets based on our individual circumstances and bodies: age, gender, height, weight, medications, conditions.

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.

18 Months In – Thank You Science!

My clinical trial rocks! No other way to describe it! If you are unfamiliar with the backstory, there is a series of articles, the first of which is A Clinical Trial – Patient Journey – Part I, exploring how I came to be on a clinical trial and the initial phases. In summary, I am on a clinical drug trial for a medication for psoriatic arthritis (PsA), a condition that affects an estimated 24 in 10,000 people (0.24% of the population).

I am now 18 months down the track, so thought it time for an update on progress!

No sore entheses! This is fantastic. The enthesis is the connective tissue between tendons/ligaments and bone. PsA rather likes entheses, unfortunately.

At my last injections I had ONE, let me say that again ONE, toe joint that glowed faintly when all the toe joints were tested. That’s a major improvement from 20!

No sore finger/thumb joints. Not one. The base of my thumbs used to be really painful. I am also no longer splinting my fingers at night on a daily basis to prevent waking up with my hands locked into fists. I find I may have to splint them about a week out from my next injections, but not always.

Left and right index finger splints

My shoulders are fine. Admittedly I do a series of exercises to maintain my shoulders which have helped considerably, but the reduced inflammation is fantastic.

My wrists, which would flare regularly, have not flared for months. I can’t remember the last time.

There has been no progression to other joints. There was no hip or elbow involvement, for example, and there still is no hip or elbow involvement.

My skin in 100% clear. Yes, 100%, clinically assessed.

My finger nails are back to being perfect, although two toe nails persist in having white spots and and the tell-tale ridges across the nails. But they no longer crumble off.

No dactylitis (sausage fingers/toes) this year.

I have lost the 20 kilograms I’d gained with all the various medication changes prior to starting the trial.

Energy levels are much improved. I won’t say back to normal, but much better than previously. This is evidenced by the that fact I am back working full-time. No, I did not take on a senior management role, that would have been too much, but I’m working.

The dreaded brain fog is also much improved, as I have noted before. I don’t like the term brain fog, as readers may already know, but everyone is familiar with the term.

No adverse side effects! After my previous experiences, this is yet another fantastic aspect for me personally.

At my latest appointment, one of the staff commented, correctly, I was lucky I don’t have any joint deformities, especially of the hands. I put this down to early medical intervention – I was lucky to be diagnosed early in my journey.

I’m not cured. I am as close to being cured as I probably ever will be and that is a great thing. The medication, risankizumab, isn’t the only weapon in this war though. I am, as is well known, I firm advocate of Movement is Medicine. I keep my muscles strong. I still wear my “special” shoes to help my back. I had a total knee replacement this year, osteoarthritis – not something risankizumab can fix. Overall, I am very happy with progress.

Are You Moving Less While Working From Home?

Working from home is with many of us, perhaps for longer that we may have initially envisaged. It is very important for all of us, but most especially those with arthritic and other chronic conditions where movement is beneficial, to ensure we don’t fall into the trap of becoming more sedentary! Most of us working from home are sedentary enough already, bound to our desks and laptops as we tend to be.

The good aspect is we now have the opportunity to put the commuting time to better use – we just have to make sure that IS what we do!

I am now balancing being back in an accounting role with my medical need to keep movement levels up plus the continuation of post-surgery knee rehabilitation exercises. What have I learnt already? I let my rehab exercises slip a couple of days, I ate at my desk twice and one morning I sat for WAY too long without getting up! Not good. For some inexplicable reason I found myself drinking more coffee and less water, so I’m being more aware of that now.

My daily physical activity commitments currently are:

  • 40 to 45 minutes of formal walking
  • achieve a total of 7,500 steps a day (limited due to post-surgery)
  • 40 minutes of rehab exercises

Swimming and weight training aren’t in the list as the gyms and pools are still closed in Melbourne due to Covid-19.

There is the need to avoid that dreaded boom/bust cycle and pace all of the above accordingly with working hours. These are not necessarily considerations for people without underlying health conditions: even so, worth bearing in mind!

Although the rehab routine is not tiring, the walking can be; especially if one has worked all day. Fatigue IS a symptom many of us live with. Mine is now minimal (thank you risankizumab), but I remember the days when I suffered quite badly from the fatigue. So rest time is important, it has to be part of the routine we establish.

I’m still at the stage of developing a daily routine. Finding what works for me. For a WFH day, I eat breakfast, walk for 25 minutes, then get ready for work (do my hair, pop on the lippy etc – all those video meetings!). Watch out for those back-to-back meeting days! The sitting time can easily extend to three hours. If you don’t have a sit/stand desk (mine is arriving soon!) this can be a trap. Watch your calendar: suggest different times for meetings if you have too many one after the other. Remember to take regular breaks from your desk.

Make sure to take a lunch break. This is important: move your body, stretch, sit in a different chair, break the mental exertion too. Do not eat at your desk.

I’m still working out the best time to do my rehab routine. If I do it in the morning, I need to get up earlier. If I do it after work, I’m becoming fatigued and I still have another 15 to 20 minutes walking to do. I’m thinking lunchtime might actually work best and will try that this coming week. The second walk is important because the one thing we lose while WFH is incidental exercise. No campus to walk around, no walking to and from the car park or tram stop. Those activities all add to our step count for the day. But we do have that extra time from the commute we no longer do, as mentioned earlier. It is finding the right balance.

Catching up on activity on the weekend is usually not an option for those with chronic conditions. Catching up just initiates a boom/bust event and none of us need that. So consistency is our friend. It is finding the right routine for each individual that is critical. What works, what doesn’t work?

Consistency is our friend

Weather can also throw all our plans completely out the window. I walk in the rain and in the cold – I can’t manage the heat. The heat intolerance that came with the hyperactive thyroid does seem to be finally abating: I found it much less troublesome last summer. I hope that persists! For others, the cold could be an issue. Weather is not related to WFH specifically, but working does mean we have less flexibility to juggle our physical activities around the weather.

Walking in the Rain

On days I physically go into the office (few and far between) I know I will get more incidental steps walking around the campus, to and from the car park, etc, therefore I don’t worry about a second formal walk on those days as long as I hit the 7,500 step count.

It is important to keep moving, get outdoors (mask up!) and not become glued to our desk and laptop. And on that note, I am now going to move, because it is Saturday and writing this is enough sitting for today!

An Announcement

I have made the decision to no longer offer personal training services. I will still write and share chronic condition experience, research and information. I am available to participate in applicable research projects and very open to speaking engagements.

I’ve made this decision slowly over the last 12 months. The primary factor that drove my decision was my responsibility to clients. Personal trainers are required to maintain current first aid and CPR certifications. The last time I did my CPR certification I struggled maintaining the position required due to my knees and my back. Now I’ve had a total knee replacement kneeling is challenging (not impossible, just challenging).

I don’t want to paint a bad picture – my operated knee is fantastic and my back rarely bothers me except for certain positions, giving CPR being one of them. I am well aware that were I struggling to maintain a CPR rhythm due to my physical limitations, that could be disastrous.

In addition, recently I have found my physical strength is not what it used to be. Partly this is due to the limited strength training I have been doing myself, partly it is due to the simple fact I’m not getting any younger. I find loading a 20 kilogram weight onto the leg press a challenge and as a working personal trainer I should be able to do that for clients.

While I am a firm advocate of Movement is Medicine and exercise has done absolute wonders for me and my condition, I don’t feel I am strong enough myself to provide the level of service to which I aspire!

It is spring, the blossoms are out, time for new opportunities!

Keep MOVING! I will be!

Thirteen Weeks! (Knee Arthroplasty)

It seems like months ago, yet really it is no time at all! Thirteen weeks have flown by.

I kept up the rehab exercises every single day for twelve weeks. With the approval of my surgeon, I have now dropped to every second day but I have increased my walking. I was aiming for my first four kilometre walk today, but missed it by 120 metres – slight miscalculation on my part! It is important to keep up mobility work on your knee, so I do.

With the encouragement of my trusty physiotherapist, I’ve even managed to do single leg glute bridges. I was doing 30 glute bridges a day, now I’m doing 30 every second day. Unless I get super bored by Covid-19 lockdown and then I might still do sequential days.

What can I say? I. LOVE. MY. NEW. KNEE.

I think at thirteen weeks it is safe to say that! I’ve even knelt on it – not too often and not for too long as yes, kneeling on it does feel very odd. I don’t think I’d be out kneeling for long periods weeding a flower garden, for example. Plus the risk of kneeling on something sharp and not feeling it is always a possibility – to be avoided at all costs.

I can now walk down stairs normally, rather than the bringing the two feet together on one step method employed initially. My flexion was last measured (about week 10) at 145 degrees: I was very happy about that!

My right (the still natural knee) decided to be nasty almost a month ago. My physiotherapist said in her experience this is not unusual and should settle with some love and care. It seems to be settling down this week, possibly a load issue due to the operated knee not doing its fair share for a few weeks.

The only remaining issue I had at 12 weeks was a bit of pain around the kneecap getting on and off the toilet. However, even that seems to have resolved. I had adjusted one of the rehab exercises to strengthen the muscles used in that action and it seems to have worked. Plus the glute bridges, of course!

I recognise I’ve had a very successful knee operation. My surgeon is great, my physiotherapist is great and yes, I was dedicated to doing my rehab consistently and effectively. Between us we got a great result.

A word about rehab exercises. I used the word effectively in the paragraph above. From my experience, that is critical. It can be tempting to “back off” if an exercise causes a little discomfort (most don’t). Especially I found the stretches can really feel as if you are stretching! I’m not suggesting suffering pain, but at the same time don’t back off at the first twinge of discomfort either. Check with your physiotherapist if you are unsure.

One of the extra exercises my physio gave me was to lie prone (face-down) across the bed with a weight on my ankle and let my leg be stretched that way. Let me tell you, trying to take a photo of yourself lying face-down in this position is not easy, so I’ve drawn a little stick figure to give you the idea. CHECK WITH YOUR PHYSIO FIRST before trying this at home. Everyone is different!

I’m using this exercise to illustrate the discomfort factor. I started with one kilogram for 30 seconds. I can now do two kilograms for over a minute. Yes, it does hurt a bit this one. Not the actual knee, but the muscles. In my specific case we have been working on getting those muscles working properly again. I persevered. No, I didn’t let myself get into a really painful place (a martyr I am not), but I didn’t stop as soon as I felt a twinge either. The physio did warn me it would hurt a bit. The benefit is I have 145 degrees of flexion!!

We are all different, we all have different pain tolerances. Even so, we should feel as if our exercises are doing something.

The flip side of that coin, of course, is not to go to the other extreme and overdo things. When I was leaving rehab, I asked the physio how far was I allowed to walk, one kilometre, two? She looked at me and in a stern voice said, “I was thinking the end of the street”. One of her colleagues, who had worked with me on some days I was there, piped up from the other side of the rehab gym, “Just make sure she doesn’t live on Dandenong Road!” For those with no knowledge of Melbourne, Dandenong Road is very long, a major arterial road. I got the message.

I was splitting my walks, one in the morning, one in the afternoon. However with Melbourne in lockdown, where we are only allowed to leave the house once a day for exercise, I’m increasing the single walk.

I miss the gym, swimming and hydrotherapy pool. I was hoping to be back on the leg press by now! All in good time.

Oh, did I mention? I. LOVE. MY. NEW. KNEE. 

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My Total Knee Replacement
Home: Now the Willpower Kicks In

The Gods Brought to Their Knees by the Invisible

Humans are Earth’s chronic condition. We destroy at will. We see our species as the pre-eminent beings on the planet. Although many believe in a God or Gods in the heavens, here on Earth the human species is all-powerful.

This year the God-like species has been brought to its knees by something it cannot see. A tiny, minuscule, virus. So insignificant, it is not considered to be living. Yet this unalive molecule coated in protein has shut businesses, grounded air traffic, overloaded the health systems of several cities and killed nearly 700,000 people (at the time of writing). We wear masks, socially distance and in Melbourne we are now under a curfew. Many work from home, many are not working at all. The human worship of the great God Economy has been called into question most dramatically by the state of our aged care homes.

Despite great advances in science and technology, humans are losing the battle. The front-line defence, healthcare workers, are dying.

Some leaders are performing brilliantly trying to save and protect their constituents. Local leaders Dan Andrews of Victoria and Mark McGowan of Western Australia spring to mind. The New Zealand Prime Minister has achieved what many deemed impossible. Others are intent on using the virus as an excuse to denigrate these leaders and undermine their efforts. Tim Smith and Tim Wilson are two examples in Australia.

I am the beneficiary of advances in medical science. I have a prosthetic knee and I’m on a clinical trial. If I was living 200 years ago it is possible I’d be severely immobile, yet in 2020 I am lucky enough not to be. While I recognise the wonderful things we, as a species, are capable of, I also recognise how damn stupid we can be.

I don’t need to provide links, nor do I want to, highlighting the ridiculous conspiracy theories and “my rights” people. The inability of some to accept the existence of something they can’t see is one problem. The selfishness of the “it is my right to go maskless” brigade is another. The lack of numerical literacy, where people cannot comprehend growth rates and infection rates, is a problem.

At the moment there is much talk of vaccines. I hope as much as anyone that a vaccine is developed: I am also aware it will be the first coronavirus vaccine. To date we have not developed one, partly because coronaviruses have not previously been so contagious and deadly/damaging. Then there is the question of availability. Will only the rich be able to afford any vaccine, or will a vaccine be made available to all? The great economy, you see, would not like a free vaccine.

The human species has been brought to its knees. Not by aliens, not by flood or fire (yet, that’s coming) but by an unseen molecule. Humans are reminded despite our belief in our own pre-eminence, that we are vulnerable. Humans can, indeed, be on the receiving end of the same brutality humans dish out to other creatures on this planet. We steal and destroy their habitats, we shoot them for sport, we really don’t care if other species become extinct through our actions. Now we know how it feels. We’ve lost the freedoms we took for granted: the freedom to crowd supermarkets, to fly to the other side of the world on a whim, to get a haircut when we feel like it.

The fragility of nature

We ignored the beauty and fragility of our world because we did not feel fragile. We redefined beauty to be tall skyscrapers, fast cars and electric lights.

Human’s biggest enemy has always been other humans. Wars. Killing each other. Now humans have a new enemy. It isn’t the first and according to science, this will not be the last.

I wonder if this is the wake-up call we need. Time to re-evaluate our way of life. Re-evaluate our disrespect for the flora and fauna with which we share this planet. Re-evaluate our worship of the God Economy.

Managing the economic and social costs of the survivors suffering chronic illness is going to be a challenge. As I have written before, as a society we do not cope well with chronic conditions, I worry that many are going to suffer greatly in the years ahead.

How we cope with the aftermath of this pandemic is going to be a major test of the humanity of the human species.

 

Telehealth – Let Us Keep This Innovation!

The Covid-19 pandemic has brought sadness and pain globally: job loses, businesses closing, the high death toll in many parts of the world. The loss of family members, colleagues and friends is devastating for those affected, irrespective of the death toll of any given country.

One positive that has emerged is telehealth. In Australia telehealth was already available in certain regional areas: during the pandemic it has become widespread. The Guardian published a very good article from the perspective of the medical profession, “The genie is out of the bottle: telehealth points way for Australia post pandemic“.  Here I present my perspective as a patient.

Telehealth is fantastic! Especially for me and I suspect for many other chronic illness patients who see a collection of doctors. Apart from the obvious Covid-19 related benefits of limiting unnecessary contact and thereby maintaining isolation, there are other benefits.

  • Many chronic illnesses have a tendency to flare, meaning even without Covid-19 travel to and from a medical clinic can be an unpredictable physical challenge.
  • In situations like my current one, awaiting total knee replacement surgery, the main focus has been pain management (I’m pretty healthy other than the knee). My GP has been wonderful, keeping in touch, ensuring I’m managing, reviewing the pain management plan, faxing prescriptions to the pharmacy when necessary.
  • My endocrinologist really doesn’t do much with me physically during my visits – observations such as weight, blood pressure and temperature I can provide (although she didn’t ask – this may be an area where some practitioners have to develop a bit of patient trust!). Aside from my description of my health, in my case at this point, it is mostly blood test results that drive decision making, plus an annual ultrasound of my thyroid. Telehealth worked perfectly and saved my travel time, fuel and parking costs. She emailed me a pathology request for my next appointment in July.
  • My psychologist used Zoom, which worked really well. Again, saved travel time, fuel and parking (although that parking location is free in my case). For me it was clinically no different to sitting in her rooms, yet I was in my slippers and had a coffee on hand!
  • Hospital pre-admission appointment for surgery. Yes, my surgery is actually happening, next week! While I was to have a face-to-face appointment at the hospital to go through pre and post surgery planning and preparation when my surgery was originally booked for April 8 (then all surgeries were cancelled due to Covid-19), I had that appointment by phone yesterday. It worked well, everything was achieved as it would have been in a face-to-face appointment, including my being able to confirm I can take nail polish in with me to apply post-surgery.
  • I can see benefits for working people too. A 15 minute phone consultation is a lot easier for a working person than taking several hours off work to go to the doctor. Let’s face it, it does take several hours: travel to the clinic can easily take 30 minutes or more, wait time (minimal if your doctor runs on time), consultation time, maybe a stop at a pharmacy, travel back to work depending on the time of day. I suggest most of us would not return to work after a 4 pm appointment, for example, or go to work before a 9 am appointment.

I have long-standing relationships with my doctors: I’m not sure I’d like to have an initial consultation with a new doctor by phone, although video conference may be fine. I’d prefer my GP and specialists used video and I think that will come in time.

Clearly telehealth doesn’t work for everything: my surgeon is not about to slice and dice me over the internet. The physician couldn’t do his pre-operative physical examination over the phone. I couldn’t get the ‘flu shot remotely.

For on-going management of existing conditions it works beautifully from this patient’s perspective.

There may be opportunities for people such as myself to assist patients with technology in their homes. I notice the article linked above mentions this:

Dr Chris Bollen, a GP in Adelaide who cares for many elderly people living in their own homes, has spent much time recently teaching patients to use FaceTime and other digital platforms. He is excited by the potential for telehealth to help support older people to live independently…

The article also points out that the current arrangements are planned to be temporary.

These temporary arrangements are due to end on 30 September, and the health minister Greg Hunt has flagged his support for their continuation, although many questions are yet to be answered about the rollout and impact of these services.

I hope teleheath stays. It also has environmental benefits which are discussed in the above article. It works for many situations, it is now proven. Let’s keep it.

A Clinical Trial – Patient Journey – Part V

Catching up?

Apart from draining trial participants of blood every visit, as I have mentioned before joints and entheses are assessed for improvement – or not.

For my first 26 weeks of the trial, the period we now suspect I was on placebo, there was no real change in my hands or feet. Other areas are assessed but for illustrative purposes, I am only going to talk about hands and feet. Many of the joints subject to assessment, such as hips and temporomandibular joints (TMJ), I have not had problems with, so not much point in talking about them!

Now if you don’t know how many joints are in your fingers and toes, let me tell you – quite a few! They test 28 total in the fingers and 20 total in the toes on my trial.

While my finger joints were never my major trouble spot, my feet were a different story. Every single joint would light up with pain when assessed. In some cases, big red siren type lights.

Four weeks ago there was certainly a reduction in the number of joints that lit up and most of the ones that did react to assessment, were as if the dimmer switch had been activated.

Today? Today only TWO toe joints lit up and even those were a faint glow. That is two out of 20!

The hands? Not one of the assessed joints lit up. NOT ONE! Yes, I am still splinting those two trigger fingers at night, but that is not a finger joint issue and they are also improving.

One of the other aspects I am very pleased about, given my past medication experiences, is NO SIDE EFFECTS! Obviously there can be clinical side effects from medications that I, as the patient, would not necessarily recognise, which is one of the reasons they take all that blood. Are my kidneys OK? Is my liver still happy? But from my day to day living experience I’m not having any side effects like I had with the four previous treatments I have been on.

From here on in, I only visit the research clinic once every twelve weeks. The hard part is over. I don’t expect to have any really news to share for the remainder of the trial, providing everything continues to go well. Yes, there is a possibility I could stop responding at some stage in the future, but I’ll cross that bridge if and when it happens.

That just leaves me with the problem knee, but there have been announcements this week surgery will be commencing again and joints are on the list so I am hopeful that will also be resolved ….. shortly. I’ve already been on the phone to my surgeon’s office, so I’m waiting for a date!

I am very happy with the results. I love the team at Emeritus Research, it really is like dropping in to see good friends. Very professional good friends: as a trial participant I feel very well cared for and valued. Great atmosphere. Just watch the coffee machine if you like flat whites, it can overflow!