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.

Engaging the Correct Muscles

You did it! You went to a physiotherapist or exercise physiologist (EP) or personal trainer (PT) and you now have a resistance training programme! Congratulations, you have taken another step in managing your chronic condition.

Even though I am qualified, I still seek the assistance of other professionals when I deem it appropriate. I did recently, with my osteoarthritic knee.

One of the exercises I have to do currently is the TRX supported squats shown in the above photo. As I was doing them alone I realised, “Hang on a minute, I’m using my arms to pull myself up!” This, of course is not the idea at all with squats – the target muscles to work are the lower body! Yes, in this case I am using the TRX to support, but I still need those lower body muscles to do at least some of the work!

While we are under the watchful eye of our physio, EP or PT they are watching closely and monitor that we are engaging the correct muscles. Technique isn’t just about holding correct form (e.g. a straight back), it is also about using the right muscles.

Once we are on our own, not being monitored, we have to ensure we are feeling the right muscles working. Sometimes that is harder than others. During a leg extension exercise it is a little harder to cheat, but those TRX squats? Quite easy to cheat. Especially for those of us with chronic conditions trying to rebuild our physical strength and resilience.

When you are in the gym by yourself working your program, check the pictures on the item of equipment (if you are using equipment), there should be some like this.

Concentrate on feeling those muscles working.

Where there is no pictorial reminders or guidance, there is usually a gym instructor on duty who won’t mind checking your technique for a moment or two if you ask.

During your physio, EP or PT consultation, make sure you are clear on exactly which muscles you should be engaging when doing each exercise and make sure you concentrate on feeling them working when you are on your own.

We want our time spent exercising to have therapeutic value, after all!

Bonus Reading for Psoriatic Arthritis patients:

A resistance exercise program improves functional capacity of patients with psoriatic arthritis: a randomized controlled trial

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!

 

chronic conditions care courage consistency coaching

Care, Consistency, Courage and Coaching

Chronic Conditions

Care, consistency, courage and coaching are my “4 Cs” of chronic condition management.

Care

There are different types of care. Top of the list is great medical care. You must have a good relationship with your primary care provider (general practitioner, GP). I’m not suggesting you be family friends who go out for dinner (that could be difficult) but you should feel comfortable that your GP “gets” you and that you trust their level of care. This is the medical professional on your team that herds the cats (your specialists) and keeps the information flowing, in a sense the gate-keeper.

Self-care is extremely important. Self-care isn’t all bubble baths and scented candles, although those are nice. Self-care includes doing the things you MUST do to maximise your health, minimise your pain. Making the time to do stretches, walk, swim, lift weights, sleep, eat well: “doing the hard yards” as my father would say. Yes, the other sort of self-care, the time-out, rest, relax: also very important.

Mental health care is extremely important. As I have written about that in “We Need Mental Health as well as Physical Health, I won’t say more here. Reducing stress is part of mental health care.

Being careful is also a form of care. One example I have written about before is changing exercises where necessary. My own example is I no longer do dumbbell chest press because getting off the bench irritates my spine.

Being careful with our body weight is important – for many, weight gain can mean increased pain levels.

breakfast
Breakfast

Consistency

Consistency is paramount. When we were healthy, our bodies could recover from a week or two of no exercise, a night on the booze or day of crap food. Sure, we may have suffered a hangover or the scales may have jumped a kilogram, but we easily recovered from the damage.

Once we have a chronic condition/illness/disease not only are our bodies not as resilient, we are likely on medications that, while doing very good things for us, may also compromise other aspects of our “internal workings”. My own example is my rheumatoid arthritis (RA) medication suppresses my immune system – logical when you think about it, of course, given RA is an autoimmune condition, my own immune system attacking me. This means I have to be super careful not to catch bugs/viruses, as I recently did. I ended up in ED with what felt like a ping-pong ball in my throat.

Exercise, such as stretching and resistance training, will stop your body deconditioning and greatly assist with pain management. However, the gains we make can be lost VERY quickly once our bodies are unwell. Consistency is vital to ensure we maintain our gains and keep building on our achievements. I have discussed exercise in more detail in Doctors and Exercise, so please click that link for a more comprehensive presentation about the importance of exercise.

de-conditioning

During a consultation with my endocrinologist he asked, “Do you take your meds?” Frankly, I was shocked – what a strange thing to ask, I thought, of course I take my medications! He asked because my thyroid was misbehaving again and my blood tests were not within the reference range – again. Clearly some patients don’t take their medications as prescribed.

Most medications for chronic conditions require consistency to be effective. If you feel the dose or the medication isn’t working as it should, TALK TO THE SPECIALIST before changing anything. You may do more harm than good. If the problem is remembering, set alarms in your phone. Some medications can take three or more months to reach the required level of effectiveness.

Be consistent. With medications, exercise, diet, rest, sleep, hydration.

consistent exercise
Consistent daily steps

Even if you have to dance to get there!

Courage

Yes, courage. It takes courage to start AND to keep up the fight. “The cave you fear to enter holds the treasure you seek”. The treasure is maintaining quality of life for as long as possible. For some, the cave is MOVEMENT! It can be hard to think about movement when we are in pain. Or we feel we can’t “keep up” in the gym. Today is my swimming day. The predicted high is 13 Celsius. Do I REALLY want to get into my bathers and hit the pool, or would I prefer chocolate cake and a nip of Bailey’s Irish Cream? Consistency! Courage! Just do it!

leg press

The benefits are worth it. I have avoided a knee replacement and radiofrequency denervation of the lumber spine. Yes, I MAY need both some time in the future (distant future, I hope) but for the moment, I’m good. I’m on no pain medications.

Four years ago I started with four x 5 minute walks a day.

Now a gym session looks like this:

  • 4 sets leg press
  • 3 sets chest press
  • 3 sets shoulder press
  • 1 set body weight squats
  • 3 sets Smith Machine squats
  • 3 sets tricep extensions
  • 3 sets bicep curls
  • 3 sets lat pulldowns
  • 3 sets leg extensions
  • 3 sets pec dec
  • 8 minutes on the rowing machine

I got VERY annoyed recently when I lost muscle strength and had to drop my leg press weight down from 160 kgs. While we still don’t have a medical explanation, I am building back up again, so perhaps it was just a temporary glitch. We have temporary glitches.

I didn’t get to where I am now without care, consistency and courage.

Coaching

Professional athletes all have coaches. They have goals. WE also have goals (hopefully SMART goals)!

Perhaps we need to look at ourselves as endurance QOLs –  Quality of Life is the goal we strive for, not necessarily running 3,100 kilometres in 45 days! Our mental challenge can be just as extreme, even if our physical achievements are not. 8 Steps to Retain/Regain Quality of Life

People are all different, conditions vary greatly. Even so, the sooner you start managing your condition instead of your condition managing you, the better your chances of retaining your quality of life for as long as possible.

Sometimes all that is needed is help to get started. Sometimes a patient may prefer longer term support and encouragement.

Coaching helps the chronic condition patient take control. There is a fifth “C” – Control!

Too often patients feel they are “OK for the moment, I’ll worry about all this later” (when my job is not so stressful/the kids are older/the house is paid off). My advice is don’t wait. Start now to protect your future.

Contact me for a confidential chat as a starting point.

Note this article is intended for chronic condition patients who have a medical clearance or medical advice to exercise. This can be at any level from beginner.

Hydration Habits – Are You Drinking Enough?

Yes, the dreaded word – HYDRATION. Are you monitoring your fluid intake? Is it enough?

I, as an exercise professional, should have this down pat. Of course I drink two litres of water every day! Or do I? See if any of this rings true for you.

Yesterday I had a few minor disruptions to my day. Who doesn’t have disruptions? Driving home from the vet with my cat (THAT is a WHOLE other story!), I realised all I had drunk all day was three cups of coffee. One with breakfast, one after my manicure and one with lunch. It was now 6:30 pm. So I had drunk no more than 660 mls of white coffee. I’d had yoghurt on my breakfast, not even milk! I had thrown down the morning medications with some water, but what was that? 100 mls max?

As we get older there is an added problem – we tend not to recognise we are thirsty. Even before that stage of life hits us, we can think we are hungry when we are actually thirsty – and for those of us managing our weight in order to manage pain, eating instead of drinking is not a wonderful thing.

At my desk job I am good. As soon as I arrive in the office, I fill this water container. it is 900 mls and I finish it by lunch time. Refill, repeat.

When working out I am good! I may be a little too pink, but I’m good.

OK, you got me, two of those are protein shakers, but the shot does illustrate maybe I should try a change of colour next time. I DO have a dark blue water bottle as well. I’m not exactly short of water bottles: one permanently in the office, one permanently in my gym pack and a third floating about.

It is when I am home I find I am very slack. Why can’t I do the same thing at home as I do meticulously in the office and the gym, even at the pool? I do not know. I am working very hard on establishing better personal hydration habits.

It seems at home the water bottle is just never where I am. If I’m in the lounge, the water bottle is in the kitchen. If I’m in the kitchen, the water bottle is in the bedroom. Plus I have a tendency not to use a water bottle at home: I have a tap and glasses right there, after all!

It is spring in Australia, at least it is spring in the states that have four seasons! The blossoms are everywhere in Melbourne. In parts of Australia we are having a terrible drought, nothing is growing, in fact much is not surviving, let alone growing.

Like plants, we don’t do well without adequate and appropriate hydration. The Australian Government National Health and Medical Research Council has good detail about our need for water. Please click on that link and read the detail. Emphasis added in the quotation below.

Dehydration of as little as 2% loss of body weight results in impaired physiological responses and performance. The reported health effects of chronic mild dehydration and poor fluid intake include increased risk of kidney stones (Borghi et al 1996, Hughes & Norman 1992, Iguchi et al 1990, Embon et al 1990), urinary tract cancers (Bitterman et al 1991, Wilkens et al 1996, Michaud et al1999), colon cancer (Shannon et al 1996) and mitral valve prolapse (Lax et al 1992) as well as diminished physical and mental performance (Armstrong et al 1985, Brooks & Fahey 1984, Brouns et al 1992, Cheung et al 1998, Kristel-Boneh et al 1988, Torranin et al 1979, Sawka & Pandolf 1990).

If you feel thirsty, you are probably already dehydrated. If you have a medical issue that compromises your ability to recognise thirst, you need to be extra vigilant.

Adult men need about 2.6 litres of fluid a day and adult women about 2.1 litres. This is over and above the fluid intake from food. More may be required depending on activity levels, climate and body weight. Medibank has a handy calculator based on age and gender, but it does not take into account climate extremes, exertion or body weight.

Around 50-80% of our body weight is water. The higher our lean mass, the higher the water content. We need water for most body processes including digestion, absorbing and transporting nutrients, disposing of waste products and keeping our body temperature stable.

Source: Medibank

It is said our skin looks better if we are properly hydrated. From my personal experience, I totally agree. Dehydration can add years to the face and who wants that? Not me!

Those of us with health challenges need to make sure we give our bodies all the help we can: hydration is important.

How are your hydration habits? Please share in the comments.

11 Tips for Dealing With Major Disruptions to Your Routine

I’ve been very quiet of late. There IS a good reason! Sometimes, despite the best laid plans of mice and men and women, our lives, our carefully planned routines, are disrupted.

A quick recap of the situation prior to the disruption. In 2016 I started part-time employment in a location that was a LONG way away from home. Relocating close to work was one of the lifestyle adjustments I made as discussed in Beat the Boom Bust Cycle.

This year, I had to move. As it turns out, this has been a GREAT change, but all of a sudden I was faced with home hunting, packing, organising the move, the paper warfare relocation involves and all the other bits and pieces that go along with moving. All on top of my normal daily commitments. Clearly, PACING was paramount if I was to come out the other side relatively unscathed!

I knew I just could not do it all without risking an arthritis flare or some other health set back. Writing was put on the back burner: it was one of the things that was, in reality, not a “Must Do” on the “To Do” list. Packing certainly was! Getting utilities connected certainly was!

The benefits? Beautiful leafy block (pictured above), quiet suburban street, cheaper and (best of all) GROUND FLOOR!

I didn’t come through it totally unscathed. Clearly moving is stressful at the best of times plus my rheumatoid arthritis medication is a immune suppressant. PLUS it IS winter! So I caught a virus about two weeks after moving day. I try to avoid catching bugs, but I think the body was ripe for invasion given the aforementioned circumstances! I was out for the count for several days!

Other life events that can be physically challenging include weddings (our own, or a family member), family holidays, community events we may be involved in organising, school fetes; the list is endless.

If it is a wedding and you are mother or father of either of the happy couple, the lead up is full of additional activities and you want to be in the best shape possible on the day.

Here are my tips for keeping our body healthy when we face a complete disruption to our physical routine that has the potential to cause us pain or a condition flare.

  1. Plan, start preparations early. Stop what you are doing if pain starts. Build rest periods into your plan.
  2. Accept help! My daughter and son-in-law helped me pack. A friend helped me unpack at the other end. If you are involved in the organisational stages as well as “on the day” or post-event clean up, make sure you do not say, “Oh, no I can manage”.
  3. Take annual leave if possible. I took a week.
  4. DO NOT be tempted to “help” the removalists on the day (if you are moving, otherwise adapt this tip to suit your situation). You organised help for a reason: whether they are paid experts or volunteers, resist the urge to throw yourself into the physical fray.
  5. Maintain your daily stretching regime. It can be easy to let such things slip when faced with exciting things going on. Your stretches are even more important now to counteract the pressure you are putting on your body.
  6. You may also have prescribed remedial exercises to do – maintain those too, for the same reasons.
  7. Ensure you get adequate sleep.
  8. Pay attention to your posture. With all the bending I was doing, I was diligent about hinging at the hip to ensure I minimised pressure on my spine.
  9. Do something appropriate to support your body during this time. For example, I booked a massage the second day after the move to iron out the niggles.
  10. Eat well, ensure you consume enough protein. Stay hydrated.
  11. If this is a big social event (rather than moving home), I strongly recommend continuing to wear your usual shoes on the day (in my case kyBoot shoes). While you might get away with “pretty” shoes or heels for an hour or so, any longer could well result in pain which could be very unpleasant on the day.

Every person is different, every person’s objectives and capabilities are different. If you are father of one of the bridal couple, your one burning desire for the day may be to walk your child down the aisle and maybe walking is your personal challenge. Plan ahead, practice, seek advice from your allied health providers well in advance. If necessary, consider adaptations: for example, at the recent royal wedding Prince Charles didn’t walk the full length of the aisle with Meghan.

Yes, I did resort to Panadol and a heat pack on my back the actual day of the move, but I have even impressed myself with how well my body coped (apart from the darn virus). The annual leave certainly helped, as I was not under pressure to rush. I could work unpacking for an hour, rest for an hour, do my stretches, get my exercises done; all without feeling as if I needed to hurry or as if I should be somewhere else.

Get back to your normal exercise routine as soon as possible. I took a day off from organising the new place to have that massage and go for a long walk.

My main objective, aside from a successful move, was to ensure I did not undo all the good work I have done to date. I did not want a rheumatoid arthritis flare. I was confident if I made sure I took my physical limitations into account, accepted or asked for help as necessary and took my time, I would be fine. Was my back a little stiff? Yes, a little, but at no time was I in excruciating pain or taking strong pain medication. I didn’t expect to come through it without my back grumbling a little, given the degenerative damage.

I have boxes that need lifting to the top shelf in the wardrobes: they are not hurting anyone sitting on the floor and that is where they are staying until someone better able to do it visits! Yes, it is tempting, but I’m NOT doing that to myself! Stick to your rules! Some of us are all too susceptible to striving to be “normal” and do what we used to be able to do. That is not a good idea! My study looked like this for several days (don’t tell anyone, but it still looks very similar) but it isn’t hurting anyone and I stay in one piece physically.

I ventured, for the first time EVER to Ikea and bought a small dining table and chairs that I assembled all by myself! This is a terrible photo, but I am proud I survived the move well enough to do this! It is an extension table, ideal for apartment living, so was more complicated than a straight table.

While unpacking, I came across this poem. Some days, like moving day itself, stuff just has to be done. But afterwards? Keep this in mind!

“Dust if You Must” ~ Rose Milligan

I painted my nails instead of dusting!

Last thought – amazing the things you find when you unpack stuff.

Here is me in a Melbourne publication in 1998.

Doctors and Exercise

I last wrote about incidental exercise, but what about a more structured approach to exercise? Many of us with chronic conditions would benefit from exercise. Most of us also probably have doctors in our lives, either general practitioners or specialists (called consultants in some countries) such as a rheumatologist.

Over the Easter weekend an interesting report appeared in the Medical Journal of Australia, “Exercise: an essential evidence-based medicine”. Naturally, I was excited to see exercise receiving coverage in the medical media!

Regular physical activity is highly beneficial for the primary, secondary and tertiary management of many common chronic conditions. There is considerable evidence for the benefits of physical activity for cardiovascular disease, diabetes, obesity, musculoskeletal conditions, some cancers, mental health and dementia. Yet there remains a large evidence–practice gap between physicians’ knowledge of the contribution of physical inactivity to chronic disease and routine effective assessment and prescription of physical activity.

There was a similar report last year out of the UK, “GPs in England ‘unconfident’ discussing physical activity with patients – report”.

Now a nationwide study has revealed that 80% of GPs in England say they are unfamiliar with the national guidelines, and more than one in seven doctors say they are not confident raising the issue of physical activity with their patients.

“Many people have described [physical activity] as the most cost-effective drug we have, yet we are not implementing it properly,” said Justin Varney, co-author of the research from Public Health England (PHE). “This is as appropriate as having a conversation about smoking,” he added.

The medical advice I was given when I became sick was, literally, “Get some exercise.” Not how, what, when, frequency, intensity – just “Get some exercise”. As we know, I did better than that, I went and got an exercise qualification. After that, I asked my rheumatologist what weight he thought it would be safe for me to lift on the leg press, without negatively impacting my condition. His response? “I have confidence in you, you’ll work it out”. Which, in my case given my qualifications and experience, is fair enough. To a patient that is an exercise novice, I know my doctor would not have said that particular phrase. He and I have known each other quite some time now and have a very good patient/doctor relationship. I wouldn’t be writing this article if he had not set me on the exercise path in the first place. I share these conversations to provide real world examples of the above two articles.

Exercise is not a discipline many doctors are trained in, which is fair enough – they can’t be experts in everything and I need my rheumatologist to be an expert in rheumatology! Apart from anything else, a medical specialist would be a very expensive personal trainer. I really do not want to pay his medical charge rate for exercise advice. Look at it this way: a specialist or general practitioner may also send you to a physiotherapist, but do you expect that doctor to BE a physiotherapist? No, you don’t. So we should not expect our doctors to be able to write us a tailored exercise program either.

A member of a chronic illness support group today shared a similar experience, having essentially been told to “figure it out” by one of her doctors.

I recently wrote an article titled “Preventing Tomorrow’s Pain”. I didn’t really write it – I recorded a video. NOW, some time later, when I look back at that video, I can clearly see the improvement in my demeanour/attitude before I walk (after sitting in a conference all day) and while I am walking. Yes, I was pain free the next day and I swam 1,000 metres.

If your doctors don’t mention exercise, raise the topic with them. Really, your doctors don’t need to be exercise trainers, they just need to reassure you and encourage you that exercise will help you manage your conditions. They need to give you a medical clearance to undertake exercise. People like me can do the rest.

The above two articles, from opposite sides of the world, provide clear evidence that just because your doctor may not have mentioned exercise does not mean exercise should be ignored. Exercise may be the best medicine for you, just not mentioned by your doctor. Another contact told me when she offered to do exercise, her doctor was so surprised and said “You’re prepared to do that?” giving my contact the impression maybe he’d just given up over time trying to get patients to exercise. Doctor was very excited, patient exercises and her body does not “turn to concrete”. On a side note, I love that phrase, as it explains so well how many of us can feel if we don’t MOVE!

I use this graphic often: this is what happens if you don’t move. No, you don’t have to be lifting weights, start with simple stretches. Just MOVE it!

de-conditioning

Patients can be reluctant to try exercise as medicine. After all, instinctively we know pain is a warning signal and we believe rest will make it better even though science shows the opposite is true more often than not. We may fear those first few painful steps. A friend said the other day, “the cave you fear to enter holds the treasure you seek”. This, I feel, applies to exercise for so many people. We want the treasure: minimal pain, to be free of opioids, regain functional movement and retain quality of life. The cave is exercise and movement.

You may be reading this because you are searching for a solution. You are researching, perhaps. Do not be afraid to enter the cave. Ask your doctors, raise the topic of exercise with them. If they raise it with you, listen to them. Bear in mind the “how to” of exercise is not their specialty.

If you are ready and willing to try movement as medicine, call me or send me an email.

This article constitutes general advice only and may not be suitable in all situations. You should always seek a medical clearance to undertake exercise if you have medical conditions. Always apply the pain management principles of pacing when starting an exercise program.

Incidental Exercise

Never underestimate the value of incidental exercise. For many years 10,000 steps a day has been considered a desirable minimal level of daily activity for health. I’ve shared the video below in other articles, about the dramatic drop in activity from our active past to our now relatively passive present. Here it is again as a reminder!

I love that video because it illustrates so well the change in how we live. Our bodies were designed for the active past lifestyle but too many of us live the passive present depicted.

Back in 2014 I participated in the Global Challenge. Looking at the website for the 2018 event, I see it has changed since 2014, but the objectives remain the same. This is an annual event to encourage office workers particularly to get out and about and moving. I am proud to say I won all the trophies available, despite some challenges such as ending up on crutches due to a very, very grumpy knee.

2014 was the year I found out I was sick. Looking back, what I find interesting was my actual steps per day in early 2014, compared to that recommended steps a day number of 10,000. We received our pedometers well before the event started and several of us started wearing them to see how much of an improvement was needed. I found I was walking approximately 2,500 steps a day. I was shocked, as I had a history of being active, but, as they say, “life happened” and I had found myself in a very inactive phase.

To paint the picture of my life at the time, I was a senior manager with a company car. In the morning, I would walk out my back door, jump in my car, drive to work, park in the basement, take the elevator up to my floor, sit in my office or meeting rooms all day, at the end of the day repeat the journey in reverse. At home I was helping children with homework, cooking dinner – there was little time for me to take care of myself. I should have made the time!

Now I deliberately use every opportunity to clock up a few extra steps: my kyBoot shoes definitely help. Without the heels I can decide, weather permitting, to walk an extra 1,000 steps down the road from my office before catching the tram.

The photo at the top of this page was taken on just such a day recently. It was a beautifully sunny end of the day, not too hot, the trees provided such a pretty filtered sunlight effect and the evening birdsong was a lovely musical accompaniment: I really enjoyed just de-stressing from the office by stretching my legs.

I am extremely lucky in that the tram line goes directly from my work location to my home location with many stops along the way. I can easily walk part way, tram part way. Not everyone has such a convenient transport situation.

If you drive to work, is it possible to park a little further away from work? That isn’t possible for me, on the days I do drive to work my only parking option is the staff car park. This is one of the reasons I prefer to take the tram as it gives me more options for incidental exercise.

Cycling to work is great exercise already: my knees don’t like cycling, so it is not an option for me. Luckily my body doesn’t object to walking in any way, which is one of the reasons incidental exercise is so important to my welfare and the management of my rheumatoid arthritis and damage in my lumbar spine.

How many of us travel to the gym or the pool, to diligently undertake exercise, in our car? My swimming pool is only 1.5 kms from my home. I have reached the point now where walking 1.5 kms is easy. One issue I have to be careful of is exposure to the sun, so I can only do that walk weather permitting. I also need to be careful not to overdo it. I am well aware that a three kilometre walk and a swim may send me into the #spoonie Boom/Bust cycle if I am not careful. Pacing is paramount. My gym is located at work: I do the same incidental steps as on a normal work day.

I walk to my general practitioner’s clinic rather than drive.

As I am a person with chronic health conditions, I don’t get to 10,000 steps on a daily basis due to the energy/lethargy issues that go with my conditions. Yet. I am slowly building up and each month I am more active that the previous month.

Look at your daily routine and determine what adjustments you might be able to make to increase your level of daily activity. I am a firm believer that frequent movement is better for our bodies and our health than being stationary all of most days then working out like mad in the gym for 45 minutes maybe three days a week. I was very happy to have my belief confirmed when I did the Pain Management Program! The reality was brough home to me more recently when I spent a day in the Emergency Department (why is a story for another day) – my body almost turned to concrete through not moving. I was very stiff after lying on a hospital bed all day.

Yes, I certainly do work out in the gym because resistance training is very important, especially as we mature, but moving as much as possible is perhaps even more important, yet so difficult for many of us to achieve.

I know from my own experience with my conditions, the days I am not working in the office and move a lot more I get to the end of the day with no stiffness or little niggles anywhere. Days when I am more stationary I will end the day in discomfort. Not pain, but discomfort. Move more. Movement is medicine has become my mantra.

This is an edited version of an article I first wrote for Kybun.