Doctors and Exercise

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

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

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

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

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

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

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

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

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

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

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

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

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

de-conditioning

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

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

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

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

Incidental Exercise

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Four Simple Tips

Sunglasses

I wear glasses. I also have prescription sunglasses. Eye protection is important and the Cancer Council has eye protection advice.

One problem with prescription sunglasses is situations where the ambient light changes instantly. Such as driving into an undercover car-park (work, supermarket). I go from protecting my eyes from the sun to not being able to see and risking poor Benji’s front guard.

I have found transitions lens are not ideal as they don’t actually go dark enough while driving, due to the windscreen reducing activation.

Very annoying. I found a solution. Sunglasses that go over one’s vision glasses.

Just like this.

No, not as much of a fashion statement as my prescription sunnies, but I can whip them off as the car-park boom gate opens. No fumbling around badly/madly to actually change glasses while also trying to change gears.

Opening Jars

Many people with chronic conditions find they lose grip strength. Grip strength is actually an interesting health metric.

Grip strength is related to and predictive of other health conditions, although the relationship is not stated to be causative [4,8]. Normal hand grip strength is positively related to normal bone mineral density in postmenopausal women, [9] with some researchers suggesting that grip strength be a screening tool for women at risk of osteoporosis [10]. Longitudinal studies suggest that poor grip strength is predictive of increased mortality from cardiovascular disease and from cancer in men, even when factors of muscle mass and body mass index are adjusted for [11,12]. Hand grip strength is negatively associated with physical frailty even when the effects of body mass index (BMI) and arm muscle circumference are removed [13]. Researchers have suggested that the factor related to frailty and disability in later life is the manner in which muscles are used, and this can be measured by hand dynamometry [13].

Source: NCBI

The scientific community, while clearly finding grip strength interesting to investigate, are not around when I need to open a new jar of marmalade. This wonderful little gadget is a life saver.

Can opener

As much as I resisted buying it because doing so made me feel old and decrepit, it is a marvelous little aid in the kitchen. I got it from one of those kitchen shops, I don’t remember which one. I can confirm these work brilliantly and I have yet to find a top that didn’t fit.

Vacuuming

Bending, technically flexion of my lower spine, is not something my back likes. My back reminds me of this in no uncertain terms every time I change the linen on the bed. Vacuuming is something that can result in us looking more like a cashew than correctly hinging at the hip.

I got myself an upright vacuum cleaner.

Upright the top of the handle almost reaches my armpit, maybe 5 cm short of my armpit. I’d measure it, if I had a measuring tape! Suffice to say it is much easier to stay upright when using this style of vacuum cleaner. Mine is a Shark, but I am sure there are other brands around. It also has fantastic suction, good for all the cat hair I invariably have to vacuum up every two days. Best of all, it wasn’t prohibitively expensive.

It has just occurred to me how to solve my linen changing problem – get a bed I can raise up to a height that allows me to stand upright! Not a lot of those around that don’t look like hospital beds though. But it is a thought! Seriously, I am going to focus on hip hinging when I do the bed.

Scalp Health

As I described in EXTRA Slip, Slop, Slap Needed, medications have resulted in skin issues for me. I know others suffer similarly. My situation does not exclude my scalp and I have a prescription lotion to apply. Entirely unrelated, my hairdresser sold me some leave-in spray to provide protection to my hair from the heat of hot rollers and hairdryers. It was suggested I could just use this as conditioner.

Interestingly, now that I no longer use conditioner in the shower, which of course actually gets on the scalp, I am using the prescription lotion far less frequently. Maybe once a month. It seems that in my case, even though I rinsed to the nth degree, conditioner may have been an irritant. Now using a product that only goes on the actual hair, I have seen a marked improvement. This may not be a solution for anyone other than me, but I thought it worth mentioning.

Yes, I know – my reflection is in picture of the bottle. I’m a personal trainer, not a photographer!

What simple tips can you share from your experiences?

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.

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.

Let’s Stretch

Stretching helps us get our movement back. We don’t have to do Olympic level stretches: to start, do what you feel comfortable with. Day by day you will improve. Your aim is to increase your flexibility and functional range, not run the marathon or climb Mount Everest. It can be discouraging when we see “everyone else” able to do things we can’t. It isn’t everyone else, though – there are plenty of people in a very similar situation to ourselves. We need to let go of the “everyone else” comparison because it does us no good at all.

Range of motion can even lead us to not buying clothes we like. I tried on a dress I loved. BIG problem: it had a full length zip up the back. I no longer have the range of motion in my shoulder joint to be able to zip that dress up by myself. So I had to buy a different dress. Still bugs me every time I think about it!

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 drugs we can use.

What stretches should you do? This is will depend on your particular situation, but a good set to start is listed below. Hold each for three calm breathes, do each stretch twice. That is, twice each side where the stretch is a side-to-side stretch. Do stretches in a controlled slow manner, paying heed to your body. This is a not a race, the only aim here is to getting our body moving.

  1. Neck stretch 1 – simply tuck your chin to your chest.
  2. Neck stretch 2 – tilt your head to the side, turning your chin towards your armpit and your ear to your shoulder. Be careful not to lift your shoulder to your ear! If you are tilting to the right, you can place your right hand on your head to gently add some additional “pull” to the stretch.
  3. Shoulder rolls – rotate your shoulders in a circle backwards, with your arms at your sides. In gyms you may see people doing full arm rotations, forwards and backwards. This is not necessary to achieve your short-term objective. Do not rotate shoulders forwards, the body prefers backwards and we want to give the body what it prefers at this stage.
  4. Shoulders, chest, biceps – stretch your arms straight behind you. You can retract your shoulder blades if you are able, and clasp your hands behind your back but this is not necessary. Again, watch those shoulders – make sure you aren’t lifting your shoulders. Take you arms back only as far as you can comfortably.
  5. Side bend – sitting or standing is fine, depending on your current ability. I won’t describe this one in words as I demonstrate it in the video above.
  6. Back rotation – this can be done lying down or sitting. I prefer lying down. Lay on the floor arms outstretched, knees bent. Roll your knees to one side as close to the floor as you can, hold. Return your knees to the centre, roll to the other side. This may be too challenging, so the seated version is to hug yourself and rotate your upper body to one side, hold. Return to the centre and repeat the other side.
  7. Hamstring stretch – the hamstrings are the big muscles that run down the back of your legs. These can get very tight, especially if you haven’t discarded those high heels yet! That was a not-so-subtle reminder to check out my KyBoot recommendation. There are many ways to do a hamstring stretch, here are two.  You can sit on the edge of a chair and place one leg out in front of you, heel only on the floor, toe pointing towards you, straighten the knee and bend slightly forward at the waist. A second option is to lay on the floor and raise one leg at right angles to your body, your hands behind your thigh to gently encourage your leg towards a 90 degree angle to your body, knee as straight as possible.
  8. Quad stretch – quads are the muscles at the front of your thighs. My favourite place to do these is in the warm water gentle exercise pool with ankle floats. On land, stand behind a chair or beside something you can hold on to for support. Lift you foot up behind you towards your bottom. If you are able, you can catch hold of your ankle and lift the foot higher. You will feel the stretch in the front of your leg above the knee.
  9. Calf stretch – another stretch with options. Option 1 is to stand facing the wall, hands about head head height against the wall, one knee bent, the other leg stretched out behind you, heel to the ground. Press your heel into the floor and bend the other knee. Option 2 is to stand on a step on your toes and drop your heels below the step. The is my preferred version. You will need something to hold onto.
  10. Glute (the muscles in your buttocks) stretch – sitting in a chair, lift one your left foot up and place it on your right knee. You can push down on the left knee to increase the stretch if you wish, providing that is comfortable. Repeat for the other side. If this is too much, simply lift your left knee up and point it towards your right side. A more advanced version is to lay on the floor, bend your knees with your feet close to your buttocks, place your left ankle on your right knee then place your hands either side of the right left and pull your right knee towards your chest just until you feel the stretch in your left buttock.
  11. Thoracic Stretch/Snowangels – our upper back can get quite stiff when we are not as active as we should be or we spend too much time at a keyboard. You will need a long foam roller for this one. The pictures illustrate, I hope! Just laying on the foam roller is a good start. Snowangels add arm movements: start with your arms positioned at your sides, palms facing the floor, then take you arms in a wide arc to stretch out behind your head, palms facing the ceiling. This needs a bit of floor space as you may be surprised just how far your reach is when your arms are at a right angles to your body! This is not a “three calm breaths” one – stay on the roller as long as you feel comfortable. Perhaps start with 30 seconds if you’ve never done it before.

In the first image I have moved my arm so you can see the roller. In the second you can see my head is totally supported – hence the need for the long roller.

This is not the easiest to do and may be too advanced for beginners. Some readers will have difficulty getting on the roller and will need to build up flexibility and strength. The aim is not to hurt ourselves, so BE CAREFUL! I still prefer to hold onto something while lowering myself onto the roller. I love the way my upper back feels when I get off the roller.

Stretching daily is a very good thing. Build the time into your daily schedule and stick to it, even on the “bad” days. Design a simple spreadsheet and place it on the fridge, mark each day off as you go. Stretching isn’t the only activity we need, but it is a good place to start.

If you would like some help, Contact Limberation.

This article constitutes general advice only and the stretches outlined above may not be suitable in all situations. You should always seek a medical clearance to undertake exercise if you have medical conditions.

 

Pacing For Beginners

Pacing in the context of managing our pain relates to our rate of activity or our performance progress. In this article I am using walking (that’s why the feet!) as an illustration, but the same logic can be applied to sitting, standing, resistance (weight) training or whatever activity it is that we are having trouble doing to the level we want to.

As I have shared previously, when I was first started on this journey, I walked five minutes at a time, four times a day. Five minutes was how long I could manage before I experienced pain. Slowly, by pacing, we can build up.

Please be aware pacing is only one component of condition management, it is not THE solution. This is a general introduction only, each person requires specific planning tailored to their circumstances.

Warning: Maths Ahead

Let’s assume for the maths part of the exercise that like me, you can also walk five minutes before you experience pain.

  1. Take that five minutes as your Test 1 measurement.
  2. After a suitable rest, do a second Test. The Test 2 result might be four minutes.
  3. Add 5 + 4 = 9. To find the average of your two trials: 9/2 = 4.5 minutes.
  4. Now you need your baseline, your official starting point. This is 80% of your average. 4.5 * 0.8 = 3.6 minutes, or 3 minutes 36 seconds.
  5. Increase at a rate of 10% from your baseline. 3.6 * 1.1 = 3.96 minutes. Let’s just call it 4 minutes!

Each day you increase by 10%. JUST 10%.

Putting Pacing into Practice

How does this work in practice? I did some timings on a stroll the other day. It took me 217 steps and 1 minute 48 seconds to walk from one tram stop to the next.

What is a tram, you ask? I’m glad you asked! This is a Melbourne tram. Terrific mode of city transport.

If you don’t have trams in your area, do you have an alternative?

Why was I doing the timings? Because we can use local infrastructure to our advantage. After a while you will get very bored with your backyard or walking around the same block. Tram lines are fantastic because we can walk, hop on a tram for a rest, get off further down the line preferably within one or two metres of a nice cafe, finish our rest over a nice coffee and then repeat the exercise back.

As we build up, we can use the distance between trams stops as stepping stones. Looking at my 1 minute 48 second walk between stops cited above, that is way more than a 10% increase from a 4 minute baseline. That would be closer to 50%, WAY too much. But later on it will be possible. You are not stuck on 4 minutes for long! As you build up you can walk just past a tram stop then back and still catch a tram to reward yourself with coffee. Over time you will be reaching the next tram stop.

A little reconnaissance may be necessary. This is the tram stop I was passing. In the middle of a busy main road, there are lots of steps up from the pavement, an over-bridge and then more steps down. This may not be ideal for those pacing up slowly! This is one of the tram stops you might want to zoom straight past – as a passenger!

Of course there are many alternatives: drive to a favourite park or beach, then walk. I don’t suggest the shopping centre, as it could take 20 minutes to walk from the car park to your store of choice!

The Rules

Rule #1: stick to the times. DO NOT be tempted to do more than you should, despite how great you might feel right that minute. You risk undoing all your hard work to date if you do that.

Rule #2: do it every day. Even if you don’t feel the best today, do your allotted time. Every day.

Rule #3: Wear appropriate footwear. If it is sitting you are working on, ensure you have an appropriate chair.

Other Thoughts

I also apply pacing strategies to manage the fatigue, along the lines of how much I do on any given day. I’ve mentioned before I don’t do grocery shopping on days I do a strength workout. I don’t do strength workouts the days I work eight hours in the office. We work out rules for our individual circumstances.

Christine Miserandino (lupus and fibromyalgia) has written The Spoon Theory which is a great way to visualise the energy/fatigue situation. I found it very early on in my journey and it certainly helped me adjust to my new life. I do have many more spoons these days than I used to, but that didn’t happen overnight.

Challenges of Living Alone with Chronic Conditions

If you have newly discovered you have a chronic illness/condition/disease AND you live alone, there are challenges patients living with family don’t face to the same degree. Some of the items below I have mentioned before, but today I am looking at the specific circumstances of living alone, which can complicate matters. While we may not have children or a partner to care for (in some ways making life a little easier perhaps), the flip side of living alone means no-one to make us a nice cuppa, to help us make the bed (or let us off the hook entirely), or to just snuggle up to for comfort.

Even if we have a nice neighbour to call on for help (as I have done from time to time), we may need to plan our activities very carefully. It is easy to fall back into the boom-bust cycle, both physically (pain) and psychologically (the stress), especially in the early days. We aren’t used to the “new me” at all, we tend to think of it a bit like having the ‘flu, we’ll just get over it. No, sorry, this is here to stay (unless we go into remission, which is possible in some cases). We can learn to manage it, yes. In time and with practice.

Today I’m asking you to carefully consider the physical and practical aspects of managing day-to-day tasks. It WILL get easier as your treatment starts to work and you build up your resilience over time, learn to pace and build up (or build back) your strength, but today we are talking about the beginning, when we are adjusting to living this new life. These are some of the things I wish I’d known in the early days.

Grocery Shopping

Grocery shopping can be a challenge. Yes, I could order on-line and have my groceries delivered, but that costs money: if we live alone we don’t usually buy enough to qualify for free delivery! It is OK to carry the bags in from the car one at a time if necessary – or even half a bag at a time. Take the frozen stuff first, in case you need a rest between loads. Once you get stronger this will improve – but don’t try to do what you used to do before, not until your body is ready. If we struggle to carry in all the bags at once, where do we go? Yep, back into that pain boom-bust cycle.

Shop more frequently if possible and necessary.

Showering

I remember standing in the bathroom in tears when my shoulders were playing up badly. I could not dry my back after my shower. It wasn’t just the pain, it was the inhibited range of motion. Also, this was out of the blue, completely unexpected. Situations like that can make fears of the future rise up and cause anxiety, anger and frustration. Living alone means we have no-one to talk to about those fears right there and then, no-one to comfort us in our time of stress. Also, no-one to dry our back. Mindfulness exercises will help. Relax our mind and relax our muscles – often times that is just enough so we can complete the task at hand. That alone makes us feel better.

Bath sheets instead of bath towels are very useful. Being larger, not so much shoulder movement is needed to dry one’s back. While there is a lot of technology out there to assist people, I haven’t found anything yet that helps dry one’s back. I admit I haven’t looked very hard because the problem was not ongoing for me.

The unexpected can happen. Negotiating our ablutions, unexpected events or not, can be a challenge. Putting prescribed skin cream on areas you can’t see, for example, can be a bother to say the least.

Changing the Bed Linen

I’ve mentioned before that changing the bed linen used to wipe me out. But there is no-one else to do it, so it is either manage it somehow or sleep in dirty sheets – not the best option. Break it down over the day. Get the linen off the bed (I find that not too difficult) early, then do the rest spaced out over the day if necessary. Put on the bottom sheet, go away and do something else or rest. An hour later tackle the top sheet. If putting on the new doona cover is too hard to do in one hit, break that down too. It is OK, you are the only one seeing your messy bedroom! You have all day to get the bed back together! If we give in to the “I must do it now” story to do our bed in one hit, where do we go? Yep, back into that pain boom-bust cycle.

Above is Cleo, very comfy in her little fluffy igloo. She feels safe and warm and protected. We need to feel the same, we just don’t need to cause ourselves a flare getting there.

Our Hair

For anyone with long hair, this can be a challenge, especially if our shoulders are involved in our condition, or if standing causes pain (a chair in front of the mirror would solve the standing issue). Blow drying long hair can take twenty minutes or so, our arms raised for much of that time. On a bad day just don’t do it – letting your hair dry naturally is not a crime, the fashion police will not issue a citation. Actually, no, the fashion police might very well issue a citation, but WHO CARES! Our path to regaining our functional movement and managing our pain is WAY more important than someone caring about our hairstyle. If we force ourselves to do our hair to meet social expectations, where do we go? Yep, back into that pain boom-bust cycle.

Dishes and Ironing

Ironing is easy – I’ve talked about that before – just don’t do it. One item when you need it, that’s enough. Although sitting may be a solution, I find I don’t get enough pressure happening so the clothes don’t look “done”.

A fellow patient I know says it takes her three tries to get the dishes done, with rests in between. Standing is a major source of pain for her at this time. It is what it is – if you have to wash a plate at a time, so be it. Build up to two plates. In time you should be back to being able to do all the dishes at once, but feeling guilty because you can’t now is not going to help. Wash anything you use as soon as you use it is a strategy I adopt most of the time. Living alone we tend not to generate a dinner wash of six plates and cups, which is a good thing. If you have a dishwasher, I hate you already (I don’t).

Cooking

Cooking is a little different. We need to ensure we are eating healthy, nutritious food: the two main reasons are to enable our body to fight this battle the best it can and to minimise or reverse any weight gains due to medications and our reduced activity levels, thereby protecting our joints and internal organs. Unfortunately, cooking is not necessarily as easy to spread over the day as other tasks can be.

We need to plan our food preparation so we don’t do more than we should at any given time. We may simply have to give up some of our favourite dishes – for a while – if they require lengthy preparation. There is NO point in spending a painful hour preparing something only to be too exhausted or in too much pain to actually enjoy the fruits of our labour. Don’t put yourself through it. Console yourself with the knowledge that a dish requiring less preparation is probably a healthier dish anyway!

This is where living alone can actually be a plus, as we aren’t faced with anyone complaining about the “plain” food. Then again, someone else could be cooking for us! It is what it is, just please eat healthy, nutritionally balanced meals!

If you can afford it (many of us, having reduced our working hours due to our conditions, can not) delivered meals such as Lite n’ Easy can be a great solution, at least to have some in the freezer as a standby. I use my slow cooker to cook six meals at a time and freeze five. My freezer is bulging with pork, beef and lamb meals which take seven minutes to defrost and three minutes to heat in the microwave. Lifesavers if I have a tiring day at work. I’ve been known to boil two eggs and have them with a steam fresh bag of vegetables if all else fails.

I never peel potatoes or carrots, the skins are good for us anyway. I’m not allowed green beans or onions, so I avoid a lot of slicing and dicing. There are great kitchen appliances available to make these things quick and easy. Make Christmas present requests. I know two people who are stroke survivors, both need to manage with one hand and have quite a few utensils that are very useful. Look at what is available that will make food preparation easier for you.

General Housework

One thing to avoid is the temptation to clean up like a whirling dervish if visitors are coming. Try to spread out doing tasks over the week and have a room you can just chuck stuff in if need be and close the door! “OMG, Jane’s coming over, I must have a pristine home” is a recipe for disaster, especially in the early days when you are learning your new life. Most of us who have worked all our lives are very much into the routine of spending a good part of our weekend doing everything: clean the bathroom, dusting, vacuuming, clean the oven, maybe mow the lawns, wash the floors, change the linen, do the laundry, ironing for the week ahead, grocery shopping and THEN we used to add some socialising on top of all that.

socialising is important
I do get to socialise! It is important.

Ummmm – not a good plan any more. It doesn’t matter what your major symptom is; pain, lethargy or other. Trying to do it all is not going to help. Stop. Don’t be tempted. We have no-one to delegate tasks to and can be so tempted to do it all at once, to feel we HAVE to at least try to appear “normal”. No we don’t. We have a new normal now. If Jane is a really good friend, she is not going to care if your place doesn’t look like Martha Stewart’s been your housekeeping consultant, Jane is going to care how you are feeling, how your health is.

Summary

Look, all that and I haven’t mentioned exercise once! I am now. No, I don’t write template exercise routines and publish them because that, I believe, is inappropriate for my client base. Every single one of us is different. Different conditions, different stages, different trouble spots in our bodies. It is important we make sure we have time to build our physical condition though, in ways appropriate for us as individuals. This is NOT a luxury any more so we can look good on the beach come Christmas holidays, this is now a necessity.

Living alone can make exercise harder. No-one to motivate us or support us. No-one to take that first short walk with us. It can be easier to just turn on the TV and hide from the world.

All the above careful planning of our activities will be for naught if we don’t build conditioning into our routine. Even before I did any formal exercise or pain management studies, I learnt very early on if I moved, my stiffness and pain receded. That’s what led me to learn more. Why was it so? How much better could I get?

Have I had bad patches? Of course I have. I remember the shower incident mentioned above, another day I was woken up by pain in my right arm that was excruciating, a day I lay down for fifteen minutes and then couldn’t get off the bed. Overall am I better now than I was in late 2014? Definitely. So. Much. Better.

For Melbournites, yesterday I walked from the corner of Nicholson St and Victoria Parade to Federation Square. Stopped, had a coffee (very nice Bailey’s Latte it was too), then walked to the Arts Centre.

Bailey's Latte
This was SO delicious.

Three years ago I was on crutches.

recurring appointments

Yes, Brain Fog IS a Thing

Brain Fog is definitely a thing. Not a thing we want, like, enjoy or get used to. It sucks: BIGTIME.

There can be many causes. Brain Fog can be a symptom of menopause. It can be simply a sign of aging. It can be a side effect of medications. It can be due to lack of adequate nutrition. It also seems to go hand-in-hand with many medical conditions, including autoimmune conditions and chemotherapy.

Before we can deal with brain fog in our day-to-day lives, we have to actually come to grips with the fact it is a thing. That’s tough. I had a memory like an elephant – once upon a time. At first you think maybe you are going nuts: at one stage I asked my GP if I could be tested for early onset dementia, I found it so scary, so “un-me”. It gets less scary as you develop strategies for dealing with it.

Check With Your Doctor

If you feel you are being affected, the first thing to do is check with your doctor (or doctors as the case may be). If you are female and of the right age, it may be menopause related and you may be able to consider Hormone Replacement Therapy which may solve the problem. If it might be a side effect of your medications, there may be alternative medications that may reduce the problem. Don’t just suffer in silence without finding out if there could be a different cause or a possible solution.

My personal example is around sense of direction. I would be driving in the right direction to get from point A to point B but my emotions would be telling me I was driving the wrong way. It wasn’t just driving. I’d park in the supermarket car park and when I came out I’d have no idea how to get back to my car. Admittedly, that was in a complex of shocking design, but it was distressing. I was almost thinking maybe I was going to have to give up driving, it was so bad. My daughter drove me to a medical appointment and I was convinced she was going the wrong way. It was stressful.

For completely unrelated reasons (several side effects I won’t list) I discussed a change of medication with the appropriate specialist. Within five days of ceasing the drug my sense of direction was back. I was ecstatic! Now, I can’t prove my sense of direction issue was due to the medication in question, however the co-incidence suggests it may have been. No, correlation does not equal causation, but in this particular case I’m fairly convinced.

Write Everything Down

Makes sense, doesn’t it? Write EVERY appointment or thing you have to do down. No, it doesn’t have to be on a piece of paper in a diary. I have calendar apps on my smartphone that will display several calendars at once, in different colours. This highlights any clashes between different aspects of my life. I have my office calendar, my Limberation calendar and my personal calendar.

Flag emails for follow-up! You’ll forget you said you’d respond tomorrow!

However you choose to do it, do it religiously! Unfortunately, this alone does not solve the problem.

Look at Your Calendar

Make it a religious part of your daily routine to look at the calendar. Allow me to illustrate. Last week I had a major change to my routine. While usually I work three days a week in an office, Wednesday to Friday, Last week I changed to working Monday, Wednesday, Friday because on Tuesdays and Thursdays I am going to Pain Management School (my name for it, not theirs). This change is temporary, but it is a disruption foggy brains find …… challenging.

I had an appointment on Thursday morning. As I lay snuggled under the doona I ran my day through my head. No, I convinced myself, I have this morning free. I made plans to have a late-ish breakfast and then wash and curl my hair. I was sitting waiting for the heated rollers to cool when my allied health professional rang and asked was I all right. “I’m fine”, I replied, thinking isn’t this a truly lovely gesture on her part.

“Well, I wanted to make sure because you are always so prompt.”

O.M.G I was SO SO SO embarrassed. I’ve always been the punctuality police. Being LATE gives me the horrors. Missing an appointment altogether because I FORGOT? O.M.G.

So make checking the calendar a part of your daily routine NO MATTER WHAT your foggy brain may suggest to you. Also check for flagged emails at the same time!

Medications Too!

Medications to be taken every morning or every night may not be so bad: I find that becomes just part of my normal brush-the-teeth-comb-the-hair routine. Anything that is not daily? Make an appointment in that calendar. The Repeat function in your calendar is great for that (see picture above). The classic example (sorry guys, this is a female example) is Hormone Replacement Therapy patches. Change twice a week, Wednesday morning and Saturday evening. If my phone doesn’t beep at me, it will be Friday morning before I think to myself “Did I?”

Even this morning (another Thursday, must be something about Thursdays) I again had a late breakfast (but DID check my calendar) then took a phone call, then sat on the edge of the bed to check social media and then thought “Have I taken my medication?” I decided I was pretty sure I hadn’t, so I took it. But the change in routine nearly bit me again.

Yes, the pill organisers from the pharmacy can certainly help because you can look and see if Thursday’s pills are gone.

Don’t Feel Guilty

This is about taking care of yourself. If you stuff up, as I did last Thursday, accept this is now part of life. You will forget things. All feeling guilty will do is add stress to your day and we’ve already talked about stress. Most of your medical team will understand if you miss an appointment – they’ve seen it many times before. WE each think we are the only one, but we aren’t. Friends and family should care enough about you to understand. Work, I agree, is slightly different. If employed, we are getting paid to do a job and we should do our utmost to not forget, but if it happens, it happens. Apologise, reschedule, move on.

Shopping Lists

I’d happily been through my whole life rarely if ever writing a shopping list. Now? I write shopping lists. I can’t stand getting home from the grocery shopping to find the one thing I REALLY REALLY needed is not in that pile of shopping bags.

Variations on the Theme

Brain fog is a thing. It can also be different for different people. One thing I haven’t yet found a solution for is retention of new information. For example, I’ll read something on a web site, let’s say a price of an item. As soon as I’ve gone from that page, I can’t remember the price. While studying I found rote learning of anatomy hard to retain – I still struggle with the names of some of the muscle origin and insertion points, although I know where they are! Concentration may suffer, your mind will wander during conversations. The brain may “freeze” – finding a perfectly common word just escapes you (very difficult in business meetings, also very menopause-typical that one).

Some days, the brain just doesn’t want to be taxed.

Sleep, Exercise and Nutrition

Poor sleep, inadequate exercise and less than optimal nutrition can all contribute to brain fog, over and above any medical issues. Do the best you can to ensure you keep these aspects of your life in tip-top shape.

I’m relatively lucky. I’m not suffering from brain fog much at all and I have strategies to mitigate the difficulties. The first step was accepting there was a change and I had to manage it. The second step was learning to work with it, rather than fighting it. Fighting it is stressful and then we get back on the wheel of exacerbating our condition by fighting the condition. Completely self-defeating.

What are your experiences of brain fog? What are your managing tips? Please share!