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.

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.

And the winner is…..

In compliance with the terms and conditions of my recent competition, today is the day I am required to announce the winner. Sadly, I will not be announcing the winner.

Earlier this week I did have an initial consultation with the winner of the competition. During the health evaluation I took her blood pressure: it was higher than I would have liked. My winner has an autoimmune condition, antiphospholipid syndrome also known as Hughes syndrome. Exercising regularly is one of the treatment recommendations but this is also a condition that results in thickening of the circulating blood and carries a risk of blood clots.

As a result of our consultation and discussion, my winner made an appointment to see her GP and is now undergoing tests. Clearance to exercise has been revoked pending the medical investigations.

While on one hand I feel a little dejected that the situation has turned out this way, on the other hand I am very glad the competition led to the winner seeking the medical attention required.

Due to the situation and the timing, I will hold any further action until the medical investigations are completed and the winner has had time to consider what she would like to do. In my view this is the appropriate course of action given the unusual circumstances.

Radioactive Iodine – Three Months In

Three months ago I swallowed a little radioactive iodine pill. I did this because my hyperactive thyroid would not behave. Time to share a progress update!

I had no negative initial responses to the treatment at all, which was great (refer to the first link above for details). I did have a bit of a roller-coaster time though for a few weeks, as between the time I stopped my usual medication and the point where the radioactive iodine started to do it’s job, my thyroid took the attitude of “Free at last! Now I can do as I like!”. And it did. I do stress, every case is different – this is my personal experience and may not apply to anyone else.

Initial Reactions

Initially, I was pretty OK. By the time I had been off my usual medication for three weeks, though, I was not so physically fit! Remembering too, that my thyroid was already being naughty before I went off the medication, which I had delayed because I was attending the Pain Management Centre – so Ms Thyroid was already champing at the bit to let loose!

Prior to this change of treatment I had been building up my weights, slowly but surely. My target at the time for my leg press was 160 kg, I was sitting on 140 kg. No, not 1RM (one repetition max), that was sets. An amusing aside: a co-worker half my age and as healthy as had recently started a new training regime. We were chatting and I happened to mention the 140 kg. Knowing my medical challenges and age and gender he stared at me.

“That’s your 1RM, you mean?”

“No, three sets, ten reps. My normal. I’m aiming for 160 kg”, I replied.

“I’m lifting 140 kg”, he said, sounding somewhat demoralised.

He took that situation as inspiration and I believe his 1RM is now 275 kg. I don’t train him (he is healthy, doesn’t qualify!) but I’m glad I had a small part in spurring him on to greater heights!

Up to Two Months

Back to the topic at hand, my Ms Thyroid. My epsiodes of feeling I was going to pass out and having to lie down were becoming more frequent. I felt unwell all the time. A call to my endocrinologist and I was put back on my medication at half strength for seven weeks. Even so, when I hit the gym, I was made acutely aware my muscles were suffering. I did my usual, loading 100 kg onto the leg press for a warm-up set. I could not move the plate. Not an inch. Took 20 kg off (which meant simply removing the 10 kg weights, I clearly wasn’t going to be adding any more). 80 kg I could lift. That was a 60 kg loss. We won’t even talk about leg extensions – that was equally depressing.

It wasn’t just the weights. I had been swimming 1 km sessions. No, for healthy people that isn’t a lot, but I have to watch my shoulders. I had to stop at 500 metres. Just no oomph to keep going and I am very, very cognisant of the Boom/Bust cycle – to be avoided at all costs!

Third Month – 70% increase!

Never fear! All is not lost! It gets better!

At the two month mark I had the usual follow-up blood tests and consultation with my endocrinologist. Bloods were in the normal range and I stopped taking the medication at that point.

Shortly after that, so within the last four weeks, I got back up to my 140 kg leg press. For the last two weeks I have done 160 kg. so I have recovered my 60 kg regression and gained extra!

After that I celebrated. Yes, I had a protein shake as well, but the fresh fruit salad tasted wonderful!

My swim is also not a problem.

At this particular point I have increased my overall activity levels by 70% from where I was prior to the radioactive iodine treatment.

Before the radioactive treatment, working in an office three days and then one whole body strength workout a week and one swim, plus stretching and walking daily, was the limit of my physical activity without heading into a boom/bust cycle.

For the last three weeks I have done two strength workouts and two swims per week. I’ve dropped the duration of each session and am slowly building each back up. My aim is to double what I was doing. 30% to go!

My pre-treatment strength session was 60 minutes. I dropped it to 40 minutes, but did two sessions. I’m now up to two session of 50 minutes. I dropped my swimming to 700 metres, but did two a week instead of one session of 1 km. Now I am at one session of 900 metres and one of 800 metres.

My hair isn’t falling out and I am sleeping better. All great stuff!

I’m a very happy little Vegemite. For overseas readers, Vegemite is something we eat. Americans all hate it!

 

Prognosis

Some patients who undergo radioactive iodine treatment for hyperactive thyroid ultimately become under active – i.e. hypothyroidism. That is not expected to happen with me, which I am very happy about, but equally I am aware it could happen.

The full effects of radioactive iodine treatment materialise, generally, between the three and six month mark of swallowing that little pill. Therefore I don’t know if I can expect more improvements or if I’m maxed out at this point. I am feeling great, so if this is it, I’m happy.

I am finding I have to watch my weight more carefully. Then again, I have been socialising more than I used to because I feel so much better and have more energy. Also given my increase in strength training, there will be some body composition changes happening. I’m monitoring, not panicking. Yet. My clothes still fit!

Summary

I am very happy with the results. Apart from the short crappy period described above, the whole process was relatively straightforward, painless and easy.

If your endocrinologist recommends radioactive iodine treatment for you, based on my personal experience it is a good treatment option.

Every case is different and you should always listen carefully to your medical professionals.

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.

Make 2018 YOUR Year for SMART Goals

Seasons Greetings to all! Christmas is 30 or so hours away as I write (for those of us in the southern hemisphere). As the sun sets on 2017, we have an opportunity to re-evaluate our health progress and polish up our plans to get stronger, more active, more mobile and have less pain, less lethargy, better sleep: culminating in a better quality of life in 2018.

If you are still in “I’m thinking about it” mode, take stock over Christmas. What invitations did you turn down because you didn’t feel you could summon the energy required? Would you like to accept those invitations next year? Were you able to do the shopping you wanted to do without crashing in a heap for two days afterwards? Make 2018 the year you make the choice to include moving more into your treatment plans.

Talk to your doctors, get a clear understanding of what benefits you may expect from moving more.

SMART Goals

Now that my recent treatment change is behind me, I’m making more ambitious plans for myself and setting new goals for the new year. SMART goals. SMART goals are used in many walks of life: I’ve seen various wordings used depending on the context. For our purposes, I like the following definitions.

S = Specific. The goal needs to be something specific, not a nebulous idea.

M = Measurable. If we can’t measure our achievements against the goal, we won’t know if we are getting anywhere.

A = Achievable. It has to be achievable. If I set myself a goal of climbing Mt Everest, while both specific and measurable, for me it is not achievable. Swimming a two kilometre session – THAT is achievable.

R = Relevant. You will see realistic often used in this spot, but for our purposes I prefer relevant. We have limitations on our energy, our strength and our time. There is no point in setting goals that are not relevant to what we wish to achieve, which is better quality of life.

T = Timeboxed. There needs to be a time period within which you will achieve this goal. This helps to hold you to account and stay on target.

Let’s give it a try. “My goal is to swim two kilometres.” Is this a SMART goal?

No, it isn’t. While it is specific, measurable, relevant and (I hope) achievable, I have set no time target. “I want to walk more”, while relevant and achievable, is not a measurable goal – “more” could be anything. Walk longer distances or walk more often? Nor is it timeboxed. Walk more by when? 

Let’s have another go at this. “My goal is to swim a two kilometre session by 30 June 2018”. Now I have a SMART goal. I will need a progress plan to reach that goal, so I will need shorter term goals to get there: “My goal is to swim 1.2 kilometres once a week by 28 February 2018”.

That is one of my goals. Yours may well be something along the lines of “I will do my stretches every day for the month of January.” This is specific, measurable, achievable, relevant, timeboxed AND will set you up for the next step in establishing a movement as medicine strategy.

A walking more SMART goal could be very simple. “I will walk for three minutes, five times a day for one week”. At the end of the week a new SMART goal can be set. Remember when setting goals to pace yourself, always pace yourself.

Kyboot

For context, I was on crutches for much of 2014. I was diagnosed at the end of 2014. You can read how I started back to moving more on How tough is it to get moving?. My major goals for 2018 are:

  • Swim a two kilometre session by 30 June 2018.
  • Increase my daily step count to 10,000 steps a day by 30 September 2018.
  • Increase my leg press to 160 kilograms by 30 June 2018. (I was at 140 kg before my treatment change – I have to work back up after dropping back).

As I achieve those, I will set new goals during the year.

Of course, I have one other goal: help others get moving! I am back to normal availability after my recent hiatus, so reach out. It costs nothing to investigate the possibility.

Have a great time over the break! Stay safe!

You CAN do it!

These last few weeks have reminded me of my early days. A quick summary of the process: I stopped my hyperthyroid medication on November 5 in preparation for the radioactive iodine treatment, the radioactive dose was administered on November 17, I restarted my medication on November 27 at half the previous dose. The radioactive iodine doesn’t work for about three months, maybe even six months.

I am starting to feel much better now, one month and one day after after having the radioactive iodine. Today I managed a 50 minute strength workout but I am still 60 kilograms down on my leg press from where I was. I could not complete the final set of hammer curls. The lats and hamstrings seem to have held up reasonably well.

The nausea attacks have been quite frequent and the heat intolerance has been through the roof. Sleep disruption has again been an issue, resulting in more than the usual level of brain fog and certainly increased fatigue.

Overall, similar to when I was diagnosed back in 2014. Even the emotions resurfaced. As I struggled to finish that final set of hammer curls today I felt the tears building. Using the mindfulness techniques we learnt at the Pain Management Program I sat and reminded myself this is NOT a permanent situation. With the principles of pacing in mind, I did not push myself given the circumstances. I let the frustration go.

Normally I walk about a kilometre after my strength session to cool down, but today it was 33 Celsius and I am heat intolerant! So the walking went by the board too. I thought to myself how easy it can be to just give up. The feelings of being physically restricted are not something I like. I was glad it was not a busy time in the gym today – no-one to witness my meagre efforts. Meagre? No, the truth is my workout wasn’t meagre given the circumstances. There are many patients who can’t yet achieve what I have achieved with my medical conditions. There is that mental battle to accept the limitations AND feel satisfaction, a little pride even, for achieving sufficient physicality to regain quality of life.

Today reminded me of those old emotional battles. You CAN do it! If I, a “senior” can do it (yes, I’m playing the “old” card to motivate YOU), you can too!

The difference is I am not newly diagnosed. I know from my own practical experience that exercise is so very beneficial. Those who are newly diagnosed or who have never tried movement as medicine do not have that experience to motivate them.

I know I will get back to the levels I was at prior to this little bump in the road. I will then continue to improve as I was before. I understand what is happening in my body at this time. Not completely understand because we do not yet have an explanation for my iron levels, but we are dealing with one thing at a time. The colorectal investigations were all clear (thankfully) so that isn’t the reason. Once the thyroid function is normal, we’ll revisit the iron question having already eliminated the worst case scenario.

I also know not to go at this like a bull at a gate (something my father always accused me of doing). I’ll keep working out, I’ll keep swimming, stretching and working on VMO activation! I will just listen to my body at this time, noting what small improvements I achieve over the next two months.

All of this has delayed me opening bookings again, for which I apologise. It is also a learning experience which will be of benefit to my clients.

Limber Up to Live Life!  Check with your doctors whether exercise will help you regain quality of life. Then call me. More than happy to have no-obligation discussions if you are interested in investigating adding exercise to your treatment plan.

driving

When Treatment Throws Rocks on the Road

Maintaining our upward trajectory in managing our conditions can run into obstacles every now and then, one of those rocks in the road can be a change of treatment. We need to ensure we don’t let our progress to date slide away while at the same time ensuring we give ourselves physical and emotional space to deal with the bumps in the road.

What I have learnt from my own recent experience of changing treatment, is this.

Triple Check Any Timing Advice

You may get different advice from different practitioners involved in the treatment, if there is more than one practitioner (as is so often the case). If you have to make plans, such as time off work or someone else to care for your children, triple check! My example is I was originally told I would need to be isolated for ten days. I made plans around that advice, such as leave from work. A week before the treatment, I discovered it was five days for work, fourteen days for family/friends over five years of age who were not pregnant, and twenty-eight days for under-fives and pregnant women (which of course can affect working arrangements depending on your job). My isolation specifications are all around time and proximity: preferably not closer than two metres for more than 15 minutes a day.

The point is, when we plan for child care or time off work well in advance, we need to be confident we are planning correctly. I haven’t got to the root cause of why the patient gets different advice from different parties, just warning it is possible, so watch out for it!

Ask About Your Specific Activities

While there were pages of frequently asked questions provided, not one of them addressed swimming or going to the gym! In my case I was allowed to swim on Day 3 and go to the gym on Day 5, provided I took my own towel and kept two metres away from children. I needed to specifically ask about exercise related activities though – something I think is an improvement that could be made in the documentation!

The medical profession are certainly quick to tell us exercise is important medicine (obviously I agree) but then leave all mention of exercise activities out of the FAQs.

Make Sure You Are Advised Of Any Possible Health Effects

Perhaps due to my own naivety I expected my change of treatment to be relatively smooth. In reality, it really has been smooth, I certainly can’t complain too much! Let’s say the effects can be disruptive to your normal routines. I had a period of feeling, as an English friend says, “rough”. Rather a good description, really, rough!  While every situation is different because there are a myriad treatments out there for a myriad of conditions, I found I had an increase in nausea/lightheadedness attacks (which are quite debilitating) and I started to feel RA pain in my hands – this I believe due to the fact my thyroid was having a field day running wild while waiting for the radioactive iodine to work its magic. A thyroid on a binge can exacerbate RA symptoms. Lethargy/fatigue reared its ugly head as well for a few days.

This is being resolved by my going back on my old thyroid medication at a half dose – not an unusual recommendation in my situation, but every case is different. This is an EXAMPLE only!

A stroke survivor friend of mine recently ended up in hospital as his body adjusts to a change in medication. Very different medical cases, he and I, but similar results in that a change of treatment lead to a changed health experience, albeit temporary.

Make sure you are aware of what you might expect and the steps to take to mitigate any unpleasant effects. I knew I could call my endocrinologist for directions, I knew what to watch out for and my GP is watching over me.

Keep Moving As Much As You Can

I will be the first to admit when the nausea/lightheadedness kicks in, there is not much moving of any sort to be done. I am still constantly surprised at how debilitating it is: there is NOTHING I can do when it hits. Apart from take anti-nausea medication. Other patients I have spoken to say similar. No pain, just the awful, all-consuming feeling of utter “OMG, I have to lay down”.

In my case, the overactive thyroid, probably in conjunction with the low iron (lots of chicken and egg stuff here, I have to say) definitely affected my muscle strength/tone. I was very keen to get back in the gym as soon as possible as I know my conditions result in the loss of previous strength gains very quickly.  I’ve worked very hard to be able to do what I do now, I don’t want a ” one step forward, five steps back” situation! I actually haven’t made it to the gym since the treatment change. I was heading to the gym yesterday, but I got waylaid buying a dress – not the advice I would give my clients, but I’m excusing myself on the basis I did walk 8,295 steps in the process of said retail therapy! So back into it today!

I have been swimming, although that was before I started back on the medications and I could only manage 500 or 600 metres before I felt completely wiped out. The point is – do as much as you can, while at the same time being cognisant of the fact your body is going through an internal adjustment. Making the judgement of how much is not enough or too much is a skill that needs to be developed – if this is a first time experience for you, you may need some professional help in making the right choices. Listening to your body and common sense are pretty good decision making aids. Just don’t fall into the trap of using any side-effects of the treatment change as an escape clause, because you will likely regret it later.

I did definitely find I was getting stiffer over the worst few days – reminded me very clearly of WHY I started all this exercise stuff in the first place! I don’t like that stiffness one little bit. Very glad to be getting back to my definition of normal now!

Summary

A change of treatment is often recommended for a variety of reasons. I had a change of RA medication in 2016 with no rocks on the road. This time has been a bit different. I am sure over the coming years I may have other treatment adjustments or changes.

Each change may or may not bring temporary changes to our experience. Our goal during these times is to minimise any reversal of our quality of life gains to date.

As mentioned above I felt stiffness starting to return over a few days of relative inactivity. I was stiff getting out of bed, stiff getting off chairs and was finding getting out of my car a bit of a challenge. THAT, if nothing else, is enough of a trigger for me to GET MOVING! The last thing I want is to be unable to get in and out of my car!

Be prepared, plan well, use the medical support available and most of all KEEP MOVING!

Good luck!

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.