Tiger Pacing

Pacing THRU, Pacing UP, Pacing DOWN

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

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

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

Pacing THRU

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

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

White Daisy

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

Pacing UP

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

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

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

Pacing DOWN

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

de-conditioning

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

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

Dandelion

Pacing THRU and UP

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

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

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

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

SMART Goal Setting

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

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

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

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

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

Further Reading:

4 Resilient Ways to Cope With Chronic Pain – Huffington Post

Doctors and Exercise – Limberation.com

posture

Is Your Posture Exacerbating Your Pain?

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

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

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

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

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

How are you standing?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Images used under license from Shutterstock.com

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.

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.

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.

Preventing Tomorrow’s Pain

What I am doing in this video must NOT be confused with pacing up activity levels. I am not starting activity, I have my conditions under control. I irritated my body today, therefore I needed to “stretch it out” in layperson’s terms. I know this isn’t all about my arthritis today either: my lumbar spine damage was certainly reminding me it exists.

Speaking of stretches, yes, I did those too.

Do I feel 100% now? No, I don’t. I’m still a bit tender, but I know I will wake up pain free in the morning.

I am not suggesting this is the right solution for everyone. Part of managing our conditions is about learning what works for us as individuals.

Flu Vaccine

Get Your Flu Shot – NOW

No ifs or maybes. Just do it. Vaccinate, people, vaccinate. People with chronic medical conditions need to ensure they are protected. Many of us are on medications that suppress our otherwise over active immune systems. Other medications can suppress the immune system even if that is not the treatment objective.

Getting sick takes a bigger toll on those of us who are, well, you know …. already sick. Our bodies are already facing a daily battle. There is also a multiplication factor. One example is pain management. Using movement/exercise as pain management requires moving sufficiently EVERY DAY. Lying in bed for a week or more with tissues, blocked nose, headaches and fever is going to set pain management progress totally awry. While it won’t be necessarily back to Square One, there will be a loss of progress, perhaps a resumption of pain and/or stiffness. Not where any of us want to be. So not only will the flu knock us flat, it can set us back in other ways as well. I know if I spent a week or ten days unable to exercise, I would pay for it with increased stiffness and pain, plus we lose strength gains and muscle tone faster. It would set me back, and I don’t want that – for me, or for you.

Timing of the shot can be critical, as the Australian Medical Association highlights.

The Australian Medical Association has advised not to have the vaccination too early.

“Remember why you need to have a vaccine every year is the influenza virus rapidly and quickly mutates. It will be appropriate for some patients to defer having their flu shot until well into April,” he said.

Dr Gannon said people should speak to their GP about the best time to get the flu shot.

Source: Hold off getting the flu vaccine, AMA says

People with chronic disease are entitled to free flu vaccinations. Check with your doctor.

I received my first flu vaccine in 1999. I have had it every year since except one and I regretted missing it that year so much. My daughter, not vaccinated, became extremely ill last year – she WILL be getting the flu shot this year.

Get the flu shot people. Don’t take the risk. Last year’s flu season was very bad and this year’s may be worse. 1,100 people died last flu season.

Get the flu shot.

Meanwhile, for readers heading into SUMMER, remember your sun protection!

Additional References:

What you need to know about Fluad and FluZone High Dose, the new flu vaccines for over-65s

Doctors Best to Give Flu Vaccines

Australia prepares as US suffers ‘worst flu season in a decade’

Disclaimer: This is general advice. Every patient should check with their doctor to ensure correct timing for them and that there are no contraindications in their specific medical case.

Note: There is a contradiction in the ABC article linked above: a recommendation of May/June under the photo, while April is cited in the text. Check with your GP.

AprilMayJune

Note the title of this article has been updated to reflect the passage of time.

Codeine or Movement? Which Will You Choose?

There are patients whose conditions have progressed in ways many of us cannot imagine, despite their best efforts and the efforts of their medical teams. One such patient is Sam Moss. In 2010 Sam was diagnosed with rheumatoid arthritis, but that was just the start of her medical journey: she has since been diagnosed with other conditions.

12 months after my leg broke, my right femur was also showing signs of disease on MRI with bone marrow involvement so a rod had to be placed in that to prevent an imminent break and repeat medical emergency like we had with my femur break in 2014. I am constantly dealing with multiple foot fractures and none of my broken bones in my legs or feet will heal.

Source: My Medical Musings

Sam now runs a support group for those facing medical challenges, Medical Musings With Friends. It is a closed group, very supportive. If you would like to join, click the link. Membership of the group is also a rapid introduction to how severely some conditions can progress, even with the best medical care and patient tenacity in the world.

My objective, for myself and my clients, is to slow condition progression and manage pain where possible. Yes, sometimes our medical conditions do take control as described above, but many of us, in collaboration with our medical teams, can control our conditions, be the master of our medical destiny. We, as patients, want to ensure we don’t give those medical conditions any head start if we can help it. If, like me, you are lucky enough to have a choice, don’t waste that opportunity – there are many out there who would be very grateful to be in our situation. Chronic condition severity is a spectrum and we are all somewhere along that spectrum trying to do the best we can.

I support the recent rescheduling of codeine. I definitely think the change over could have been better planned, as it seems many where left without codeine OR any alternative. Those who ensured they had prescriptions found there was no stock available in pharmacies.

In the past I have used Panadeine Forte after having teeth extracted. I’ve used Tramadol (another opioid) about three times a year. I’m not against codeine per se, it has a place in medicine. Taken under medical supervision when appropriate it is a useful drug. Self-medicating with over-the-counter supplies regularly can lead to problems.

There is a reason why morphine and its equivalents feature on the World Health Organization (WHO) list of essential medicines, along with oxygen, steroids and penicillin. These are virtually irreplaceable in certain situations, including severe burns, postoperative recovery, cancer pain and palliative care. But there is no additional benefit of opioids over simple drugs like paracetamol and ibuprofen when taken for toothache, back pain, migraines, asymptomatic kidney stones, muscle sprain, fractures and many other conditions associated with chronic pain. Here, opioids are not just unhelpful but they can also worsen pain, apart from the fact that they are addictive and fatal. Therefore, it’s best to avoid them for all but a narrow range of conditions that you should discuss at length with your doctor.

Source: Ranjana Srivastava, The Guardian

Early in my journey, one of my problems was I was VERY stiff and sore when I got out of bed in the morning. I had two choices, A) try a pain killer of some sort or B) move. Back then I really had no idea what I was doing, I was on a learning curve. I found very quickly if I walked, even as little as a few dozen steps, the pain and stiffness subsided. Clearly, for me at least, moving worked.

Now, some years later and professionally trained, I am much better at linking my discomfort levels to what I have, or have not, been doing. This last week has been a classic. For whatever reason I had several days when by six o’clock at night I was out of energy. I mean totally out of energy. I’d arrive home from work and flop on the couch and be unable to move. Which, for me (and many others) is a very bad plan. The stiffness and pain returns. Just getting up of the couch, I was stiff and had to straighten my back. Not how I like to be. As anyone with chronic conditions knows, sometimes there are no obvious reasons for “flares” they just arrive unannounced. I had my thyroid function and iron levels checked, they were fine. I had again had a change to my routine, which my conditions do not seem to like very much, so that may have been the trigger. While understanding why is helpful to prevent future flares, I haven’t managed to detect a pattern (flares are rare for me), I just needed to get back on the horse.

Kyboot

When I ensure I move enough and keep my strength up I am pain free and have very little, if any, stiffness. A little discomfort every now and then if my lumbar spine reminds me “Hey, I’m here, don’t forget I’m here”. I reassure my facet joints I haven’t forgotten them, do some stretches and core strength work and they settle down.

Best-practice recommendations now are focused on self-management and self-support: moving away from opioids, prescription or otherwise, and focusing more on allied healthcare and other non-drug methods to minimise pain. Pain Australia has launched a campaign called RealRelief to help people move beyond codeine and take control of their pain. Their foundational idea is that most people with chronic pain can improve their lives without opioids or surgery as long as they are appropriately supported to do it.

The caveat there is the support. Hard to move beyond pain when you are by yourself and suffering.

Source: Making codeine prescription-only was right. Where do we go from here? – The Guardian

No, I do not take painkillers in these situations. I have an edge, of course: I did the PACT program. I know and understand the science behind the recommendations. I recognise it can be difficult for someone without that knowledge and support to resist reaching for the pill packet, which MAY give them some relief in about twenty minutes. I can walk 500 steps and be pain free a lot faster than the twenty minutes it takes the pills to work, without the associated health risks of codeine. I also stress the MAY (give relief). Anyone with chronic pain will attest to the fact sometimes the pain meds just do not even touch the sides.

What if I took Option A and reached for the pain killers instead of moving? What would happen? I’d get worse, that is what would happen. That is the cold, hard truth of it.

de-conditioningIf I reached for the painkillers, I’d then have a foggy head, so I’d lie (or maybe sit) down. I’d be doing nothing to actually strengthen or stretch my muscles or counter any of the negative affects shown above. I would progressively deteriorate over time and be on a downward spiral. Then my quality of life would suffer. Josh, another chronic condition patient, has written a very amusing story about having a couple of beers. Now, Josh is one of those patients I referred to in my opening paragraphs, he has done everything possible yet because of his medical situation he is on some pretty strong stuff. I may ultimately end up in a similar situation, but I’m going to do everything in my power to delay such a situation. I also do NOT see getting worse as inevitable for me. I like being able to have a nice wine or two over dinner or with co-workers on a Friday night without sounding smashed (to quote Josh’s wife).

I like driving, dining out, dancing and swimming. I want to keep my body as functional as possible for as long as possible. Don’t you?

driving

Once we start on that downward spiral, we find we have so many restrictions. Such restrictions may include:

  • Limited driving ability (no drugged driving, for example)
  • No alcohol
  • Progressive physical deterioration due to inactivity
  • Loss of social interaction
  • Reduced working hours or incapacity to work
  • Depression and/or anxiety

No, it is NOT easy to start the movement momentum. Sometimes it is not easy to keep it going. Yes, it does require willpower and resilience. Yes, it requires mental strength to take those first steps in the morning or after sitting for too long.

Yes, as a community we need more support. Refer again to the above article: “as long as they are appropriately supported to do it“. I was lucky enough to be accepted into the PACT program but there are not enough of those programs available yet and there are waiting lists.

Think about where you want to be in five years time. Do you want to have a body that can support the quality of life you desire or do you want to be staring down that spiral?

Talk to your doctors, ask them if movement as medicine is an option for you.

“It’s [resilience] vital to the process,” he explains. “I’ve seen patients who, under the circumstances, might want to just give up, but they don’t. In fact, they thrive. Their resilience helps them cope and keep moving forward to find a solution. They say, ‘I’m going to make it no matter what.’”

“We used to put patients on bed rest for pain. Not anymore,” says Dr. Tom. “Staying physically active is critical for pain management, as it releases endorphins which can improve your mood and even ease pain.” People who don’t move can get tight muscles, joint pain, muscle strain and spasms, which can worsen existing pain.

Source: 4 Resilient Ways To Cope With Chronic Pain

If you’d like to give moving a try, click on Contact and send me an email.

Competition: Free Training to LIMBER UP!

ENTRIES NOW CLOSED!

To welcome in this brand New Year and celebrate whipping my thyroid into submission with some radioactive iodine, I have an offer for readers! I am now ready and able to re-launch my Limberation activities: giving a lucky winner eight weeks free training seems a good way to start the year. As of this week, my thyroid function is rated as normal: I am definitely feeling the almost three month enforced hiatus was worth it!

Would you like to Limber Up to Live Life? To Move More? To start using Movement As Medicine? Reduce/manage pain? I’ve done it, so can you. 

There are rules! There are always rules! This might seem like a lot of rules for a competition, but we are talking about your health here, so precautions are appropriate!

Rules and entrant criteria

  • Have a medically diagnosed condition that will benefit from exercise (that is most of them – check with your doctor if in doubt). Please provide brief details of your condition/(s) with your entry.
  • Be taking any medications prescribed for your condition as scheduled (i.e. not skipping doses).
  • Have or be willing to obtain a medical clearance to exercise. This should include any restrictions recommended by your medical team (e.g. at one point I was not allowed to do shoulder presses).
  • Be committed to undertaking a personalised program for eight weeks. This will involve eight personal one hour consultation sessions over a two month period and completion of unsupervised exercises as prescribed on other days of the week (frequency to be determined at initial consultation).
  • Live within a 40 kilometre radius of postcode 3181 OR be prepared/able to meet within a 40 kilometre radius.
  • Be available Saturday through to Tuesday, one day per week for eight weeks.
  • Give permission to be interviewed for this website and have photos published.
  • Undergo standard fitness industry pre-exercise screening.
  • Complete initial consultation questionnaires and agreement to undertake exercise as applicable.
  • In 30 words or less tell me why you want to undertake exercise.
  • Entries close Saturday, February 10, 2018.
  • The winner will be announced February 24, 2018. The winner will be contacted personally and announced on this website. The prize is non-transferable.
  • Submit your entry via email to enquiries@limberation.com including your name, address and contact phone number. The subject line should be Limber Up.
  • The winner’s initial consultation will take place between February 24, 2018 and March 10, 2018 but can be subject to negotiation, within reason, if required.

If this page is your first visit to this website, please read my About page to understand why I offer a different training experience. I’m in the same boat as you: multiple chronic conditions, was losing quality of life, wanted to stay off pain medications.

Your contact details will not be used for any purposes other than your competition entry. All contact details of entrants other than the winner will be destroyed after the winner accepts the offer (unless the entrant indicates otherwise). If the winner is unable to accept the offer for any reason, the runner-up will be made the offer.

The winner will be chosen by me based on suitability for an exercise program and the authenticity of the 30 word outline specified above. I reserve the right to contact entrants if I determine clarification of entry details is required prior to determining the winner. This is for your protection.

Take that first step to a better quality of life today.

8 Steps to Retain/Regain Quality of Life

Earlier this week I read an article by Alicia Hill, 7 Simple Steps That Will Make You Happier. I looked at the steps and thought to myself, “These can be adapted for us, chronic condition patients!” With an eighth step added, of course. You will see why when you get there!

I also watched “Pushing the Limits” on Insight SBS. As I listened to these extreme endurance athletes, I could see a link between what I and my fellow patients learnt in the Pain Management Program and what these athletes do to push through. 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.

The 8 Steps

Step #1: Don’t Compare Yourself to Others

You are unique. I am unique. Even if we have the same condition or combination of conditions, the conditions will not express themselves identically in each of us. On paper, we may have the same diagnosis, but in our day-to-day life we may have very different experiences.

Too often we compare ourselves to “normal” people. I’ve put normal on quotes because really – what is normal? We compare ourselves to those without medical conditions.

Comparing ourselves to others is not helpful.

As Alicia says, “THE ONLY PERSON YOU SHOULD BE COMPARING YOURSELF TO IS WHO YOU WERE YESTERDAY”. And trust me, if you could walk 5 minutes yesterday and today you can walk 5.5 minutes, you are making progress, WELL DONE!

Step #2: Don’t Talk Negatively About Yourself

Too often we get down on ourselves. “I can’t even walk to the shops.” “I would, BUT…..”

Think about how you might achieve small objectives. “Right now I can’t walk to the shops. I can start pacing up. I can get started” is an acknowledgement that the shops is too far right this minute; it is also a commitment to take small steps to a goal. One goal that will improve quality of life. I offer some practical tips and ideas in Pacing for Beginners.

Step #3: Surround Yourself with People Who Make You Better

I think this is particularly important. We need our medical teams: endocrinologist, rheumatologist, gastroenterologist, dermatologist, general practitioner and many other medical people may be involved for any given patient.

We also need, as appropriate, physiotherapists, dietitians, Pilates instructors, masseurs, pain multi-disciplinary teams, hopefully you might need me to help you with your exercise.

Ensure you have good working relationships with your professionals – you will be much more inclined to stick to your medications or treatment programs if you have good relationships. If you see a doctor because he or she is recognised as the best in the field, but you can’t relate to that person, they may not be the best long term practitioner for you. Only you can make that decision.

Surround yourself with positive people as much as you can. People who understand your limitations, but will help you feel good about achieving each small step. There are many on-line support groups for medical conditions, most of which are fantastic. Be careful to avoid any where the tone is generally negative.

Yes, there are negative aspects to our conditions. If we dive into and dwell in the negativity it can become all-consuming and that will not help us achieve our quality of life goals.

Step #4:  Do Something for Someone Else

This makes us feel good, it makes us feel useful and relevant and alive. I remember one of my fellow patients was very keen to help her sister by minding her nephews/nieces. This was meaningful for her.

No, we may not now be able to do the things we once could for other people. No, I am NOT going to offer to mow my daughter’s massive lawns while she and her husband are overseas (sorry, daughter dear). I can collect the mail from their post office box though. I can mind my neighbour’s cat if she goes away.

Even smiling at someone can make their day. And yours!

Step #5:  Unplug

Yes, well, something here I should do more of! We can become very tech-addicted when we feel our physicality is so limited. Be it TV, computers, iPad, mobile phones or a combination of all of the above, many may spend too much time consulting Dr Google, playing games to take our minds off our situation, or substituting real life social interaction with on-line interactions (often to save money).

Apart from the negative impact screens have on our sleep patterns, it all adds to our de-conditioning if we do it too much. De-conditioning further reduces our quality of life.

Unplug. De-screen. Get out and look for flowers.

Step #6:  Practice Gratitude

“WHAT?”, you yell. “Gratitude? I can’t walk to the shops and I’m supposed to be GRATEFUL?”

Yes, you are. Earlier this month I visited a very dear friend of mine, Robin, who has a very lethal form of cancer. Next month he is having pelvic exenteration surgery. Robin is 56 years old and he and his wife, Moira, are deeply in love. Yes, I know – I’m Robyn and he is Robin – we call ourselves the male and female half of the same person. The surgery takes ten hours and he is an induced coma for a period of time afterwards. He will be in hospital for a month. He has already undergone six weeks of radiotherapy (five days a week) and chemotherapy (24/7). He will have another round of lengthy chemo after surgery. Heavy or lite chemo is yet to be determined.

Robyn, Robin and Moira – Perth

Am I practicing gratitude? Too damn right I am! Yes, my conditions may shave around five years off my life expectancy (provided I don’t get anything else), but I am not facing such radical surgery with an unpredictable post-surgery life expectancy (the stats are improving all the time), as Robin is. I am not losing my sexual function, or having to give up some of my favourite foods. I am not facing life with a colostomy bag and urinary diversion.

While there is no argument many chronic conditions can reach extremely debilitating and painful stages, there is much we can do to regain or maintain our quality of life if we start early, have the right treatment and support and are committed. Even if we start late, we can gain improvements. Robin doesn’t have that option. Without very radical surgery and intense chemotherapy his cancer is terminal.

I am grateful I am not the fibromyalgia patient I spoke to the other day whose skin is constantly on fire. I am grateful I am not the Victorian MP who resigned when her breast cancer returned and died the very next day.

I am grateful. Every day, I am grateful. I have been able to retrain for a new career, I am free of pain killers. I am grateful.

Step #7:  Grow Yourself

Learn as much as you can, from reputable sources, about your condition/(s). Learn how the conditions may interact if you have more than one. Quiz your medical team. Monitor your ups and downs as this will help your doctors help you.

Do not catastrophise. My doctor is still shaking her head because I wanted to pop out to have a thyroid biopsy in my lunch break. Well, they said it was a fine needle! How hard could it be? I have things to do! Perhaps I might have considered the risk of bleeding, but… *shrugs shoulders*. I’m not suggesting my approach is the most sensible, but neither is the other end of the spectrum, taking a week off in bed for something relatively minor.

The more we know and understand, the less we catastrophise and better equipped we are to manage our conditions on a day-to-day basis.

Step #8: MOVE MORE, EXERCISE, MOVEMENT IS MEDICINE

I might have mentioned this before. If I have, no apologies for mentioning it again as it is important. David Tom MD, an Arizona-based chronic pain specialist, says patients who are successful in managing their conditions see movement as medicine. I love that phrase. Movement is the one of the best medicines we can use.

Most of the articles on this website relate to moving more, so I’ll close this item here rather than write another screed!

Being an Extreme QOL

The full episode can be viewed at SBS On Demand.

The extreme endurance athletes featured in that episode of Insight SBS all have something that drives them to beat the odds. As Leah Belson says, “There’s just one life, we’ve only got one”.

One man ran a considerable distance with a torn quad. That has to have been painful. The cyclist ends up with nerve damage in her hands.

Yes, these are very, very fit, healthy people. But they face challenges the average person on the street will never face, do things many will never attempt.

We are very similar: we face extreme pain, loss of function, brain fog, loss perhaps of social interaction and relationships or employment due to our conditions. We risk the loss of our quality of life. WE face challenges the average person on the street will (hopefully) never face.

We need to find within ourselves the “something” these athletes have that gets them through. That something may well be commitment. Remember that Pain Management Program I keep talking about? It is called PACT. The A stands for acceptance and the C stands for commitment.

My friend Robin has accepted his situation and is committed to his treatment. He will get through this because he wants to continue his life with Moira. He also wants get back on that bike! Speaking of that photo, he gave me the jacket because he thought I’d feel safer. I thought he was “making” me wear it. Anyone smell a lack of communication there? 🙂 When we stopped, he asked if I was “ready” to take it off – I’d much rather never have put it on! I had my bike licence at 15, before helmets were even compulsory! I also trust him as a rider.

I recognise there are some patients who will read this and think their condition or conditions have already progressed past the point of no return. In some cases that may be so, but please double-check that thought with your doctors.

If we want it, we need to fight for our quality of life just as these endurance athletes fight to achieve their goals.