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?

pancakes

The Nutrition Conundrum

“We are what we eat”, is a saying we have all heard, probably told ourselves or others the odd time or two over the years.

We have a plethora of diets in the marketplace. I say marketplace because generally someone is making money out of the various diets. Over the last month or so I have been astounded at the COMPLETE opposites out there.

I watched a couple of videos of lectures where it was “proven” (?) we are herbivores. We should never eat meat.

Then I have read and watched other qualified people swear we are carnivores, just live on meat.

Both sides all very convincing presentations, I have to say, in isolation.

We have LCHF (low carb, healthy fat), Atkin’s, Dukan, Paleo – the list goes on. Although not my usual reference material, Wikipedia does have a LONG list of diets.

It is 2018 – you’d think by now we’d have a consensus on what we should be eating! We’ve been to the Moon, we can do heart/lung transplants, but we can’t decide what to eat?

Then I came across this article, “The Last Conversation You’ll Ever Need to Have About Eating Right“. The opening paragraph echoed my thoughts beautifully.

It’s beyond strange that so many humans are clueless about how they should feed themselves. Every wild species on the planet knows how to do it; presumably ours did, too, before our oversized brains found new ways to complicate things. Now, we’re the only species that can be baffled about the “right” way to eat.

Well, we don’t see lions or sheep or elephants debating about what to eat, do we?

Time recently published “There’s No Such Thing as a Single ‘Best’ Diet“, a roundup of recent findings.

The estimated 45 million Americans who embark on one of these eating plans each year often do so to lose weight — a highly personal process that can lead to various results. One person finds success cutting carbs. Another swears by going vegan. A third fills up on healthy fats. Each one believes she’s they’ve found the elusive secret to weight loss.

An ever-growing body of evidence, however, suggests there’s no such thing as a single “best” diet — and that nutrition is a whole lot simpler than our fascination with fads would suggest.

The edit above is mine – removing gendered pronoun! Basically, the core of a lot of the diets is the same – the proponents tinker around the edges and give it a new, attractive, (dare we suggest profitable?) name.

Yes, too much sugar is bad for our health – here’s what the science says” is the final article in a very good series about sugar from The Conversation.

The World Health Organisation recommends limiting “free sugars” to less than 10% of our total energy intake. This equates to around 12 teaspoons a day for an average adult.

But more than half of Australian adults exceed this limit, often without knowing. “Free sugars” don’t just come from us sweetening coffees and teas or home-cooked dinners; they are added by manufacturers during processing.

It’s often a surprise to learn just how many teaspoons of sugar are added to popular foods and drinks: (My note: check out the graphic – scary stuff).

I’m not even going to address the current war of words about the sugar lobby in the old days putting all the blame on fat, or the debate about the cereal lobby essentially “controlling” the establishment of government dietary guidelines. Google it, there is plenty of content relating to those debates online.

There is no doubting there is money being made in trying to encourage people to eat a specific way. One particular high profile diet promoter appeared in my Twitter feed yesterday, complaining that a criticism of his diet “… threatens my business model“. Not a skerrick of concern expressed about client HEALTH, or actually addressing the criticism in any constructive manner. Nope, “business model”, I.E. MONEY, was the expressed concern. Interestingly both tweets were deleted shortly after: very disappointing as I wanted a screen grab!

As I followed that black line up and down the pool yesterday, I tried to put myself back in the earliest days of human existence. I didn’t want to be influenced by the massive amounts of “EAT THIS WAY” media reports and yes, I know the Australian Dietary Guidelines inside out. I wanted a blank slate.

I live in a cave, which my little wandering band of humans was lucky enough to find. Do I have hunting weapons yet? Painting my mental picture, spears appeared leaning against the front door rock. Yes, we had a front door rock! How do you think we kept the bears out at night? Are we pre or post fire? I couldn’t remember, while swimming, if spears came before or after fire in the history of mankind’s development. If I’m pre-fire, that means raw meat, something I’m not a great fan of. Oh, well.

Looking out of my cave, what do I think I am likely to see that I can EASILY feed on? Fruit probably (seasonal of course). Green, leafy plants definitely. Think wild spinach and silverbeet type plants.

BUGS! Oh, yes, plenty of bugs! “To feed two billion more people, the world needs a bug diet“. Mind you, that’s if there are any bugs left – humans dislike bugs, we spend a lot of time, money and energy trying to eradicate bugs. Cockroach or centipede for dinner, dear? Of course, there is always “Soylent Green” for the future. If you haven’t seen that movie, get it. No spoilers here.

Meat would actually have been quite hard for my family to get; probably highly prized. We are a small band, including women and children. Wild animals are faster than our little legs, moving in large herds. They are very good at dodging our spears too. Fish aren’t much easier to get and birds? OMG, those darn things FLY! Roast wild turkey is not on the menu this week! Oh, I forget – have I got fire yet? Maybe not roast.

Venison

I have read research showing ancient societies ate a lot of meat but that little evidence of meat eating was found in the analysed remains of different peoples in a different location. Could this be a question of timing? Herds of animals move – maybe these second group of people had no access to meat for a time before their untimely demise? Was it an area not well populated by animals? Lots of questions.

So what do I think I am eating in my cave days? ANYTHING I can get my hands on that keeps me alive! There is no bread, ice-cream or pastry. I am probably gathering nuts and grains when in season. Just because we wouldn’t eat raw grains NOW doesn’t mean we didn’t then. Maybe we soaked them to soften them, I have no idea. But if I am hungry and there is a patch of grains ripening, I’m likely going to eat them.

Yes, if I can get meat or fish or birds, you bet I’m going to eat meat.

What about food storage? Squirrels store nuts, why would humans not store nuts. Depending on location, perhaps fruits could be sun dried or dehydrated for storage.

I’m an omnivore. I’m a human. I eat whatever I can get my hands on to stay alive.

The National Geographic has a lengthy but interesting article about research into the evolution of the human diet, “The Evolution of Diet“.

These examples suggest a twist on “You are what you eat.” More accurately, you are what your ancestors ate. There is tremendous variation in what foods humans can thrive on, depending on genetic inheritance. Traditional diets today include the vegetarian regimen of India’s Jains, the meat-intensive fare of Inuit, and the fish-heavy diet of Malaysia’s Bajau people. The Nochmani of the Nicobar Islands off the coast of India get by on protein from insects. “What makes us human is our ability to find a meal in virtually any environment,” says the Tsimane study co-leader Leonard.

Scientists slam the caveman diet – and say early humans just ate whatever they could to survive and reproduce” is another article highlighting the hit and miss nature of stone age eating.

It said hunter-gatherers in cold northern climes would have had an almost exclusive animal-derived diet but those living near the equator would have eaten more plants and fruits.

While early hominids were not great hunters, and their teeth was not great for exploiting many specific categories of plant food, they were most likely dietary ‘jacks-of-all-trades.’

That article points out we’ve changed the nutritional value of the plants and fruits we do eat based on what we deem is “desirable” rather than nutritious.

Yet modern strawberries have been selected to be large and sweet adding: ‘The foods that we’re eating today, even in the case of fruits and vegetables, have been selected for desirable properties and would differ from what our ancestors were eating.’

The other obvious variable is VARIETY (see what I did there?). Due to seasonality and mobility I suggest the variety in our diet would have been far greater than it is now. We ate what was available, when it was available, to stay alive and reproduce. Sure, today we still have some produce seasonality, but generally speaking we can go to the local supermarket and get the same things week in and week out.

Supermarket

So where does all that leave you and I, us sufferers of various medical conditions? Are we what we ate? Maybe partly. What should we eat now that we are sick, trying to get well and/or manage our conditions?

There are medical diets. If you are on one, stay on it.

If you are like me and have calorie challenges as I describe in “Lighten Up to Limber Up“, we have to get the best value nutrition within our NET calorie allowance (given our reduced fuel burn rate). Remember to fuel your exercise, so it is NET calories as described in that article.

I’m not telling you what to eat. I am asking you to THINK about what you are eating. Are you eating what you know you should be eating, or are you eating quick, easy, sweet, fatty, processed foods with little nutritional value? Are you getting adequate iron, protein and other nutrients you need?

Give your body what it needs to help fight whatever condition it is you are fighting. Bugs are optional menu items at this time.

PS: Yes, I enjoyed the pancakes VERY much!

If you need guidance with exercise or nutrition to help you manage your conditions, please Contact me.

Additional References:

Carbohydrates & Cardiovascular disease – by Dr Zoë Harcombe, awarded a Ph.D. in public health nutrition in 2016.

Preventing Tomorrow’s Pain

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

Speaking of stretches, yes, I did those too.

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

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

Flu Vaccine

Get Your Flu Shot – But Not Quite Yet

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

Melbourne Tram

Chronic Conditions and Public Transport

Public transport can be challenging for perfectly healthy people. For those of us with invisible illnesses, it can be a nightmare.

Today, for the second time, I had a spat on a packed tram.

Melbourne is host to the Grand Prix this weekend. I happen to live AND work close enough to the event to experience complete transport disruption! Driving to work is just not an option: I discovered THAT on Wednesday when it took me forty minutes to travel about one kilometre.

I think many other people had the same experience, so they ALL decide to jump on public transport for the two weeks the roads are hell.

This morning I let two trams go because there was just no room. The third tram I managed to squeeze on. Normally I have no hesitation in asking for one of the “special needs” seats, but today the tram was SO packed even that seemed too hard! I decided I’d just cling on for dear life and hope the tram didn’t jolt too much.

About two stops further along, two more people tried to get in the door I was standing directly in front of. One was a particularly assertive male, probably running late for work, who was so insistent I move forward (where I was to move TO I have no idea) that he gave me a decent shove in the back to encourage me to make room for him. While I do not like being shoved, my back likes it even less – and complains bitterly. I told him in no uncertain terms I was not moving. “I have a bad back and there is no room for me to move anyway”, I said. After all, HE was the one trying to fit onto an already obviously overloaded tram. I suggested maybe he wait for the next tram.

His response? If I have a bad back, I shouldn’t be on the tram! I was so very close to simply pushing him off the tram. He causes me pain and then suggests I shouldn’t be on the tram because I have a bad back? He had no idea whether I was going to work or a medical appointment, whether I was able to drive a car or not (maybe public transport was my only option). Yet he was clearly WAY more important, in his mind, than my (or anyone else’s) well-being.

Apart from the fact he was simply a rude, aggressive person, he had no hesitation in shoving a stranger in the back to try to force that person (me) to move. That is actually not safe behaviour. I am fine, but another person may not have been. I’m pretty fit and healthy these days, even so certain things still cause me pain. Being shoved in the back is one of those things. I know some people who would have suffered way more than I did and for much longer.

On the previous occasion this happened to me, the very bossy, aggressive person was a woman who I DID actually push off the tram! I didn’t mean to, but she pushed me so hard and it hurt so much I instinctively pushed back, she lost her balance and fell back out of the tram.

Just because we have invisible illnesses we can’t travel at off-peak times. Is this man suggesting I just give up working, give up being a productive member of society? Oh, I can just see the Department of Human Services granting me a Disability Pension on the basis I can’t travel to work because rude people shove me in the back! Yep, that’s a winner, right there! There is a very good chance he is also the sort of person who claims anyone on a pension of any sort is a malingerer – yet he doesn’t want to make a small adjustment in his day (an adjustment he should have planned for given the state of today’s trams was not a new situation) to accommodate anyone else. Clearly I should just take my damaged spine elsewhere and let him take my place on the tram.

Yes, I am venting. I am venting for all the other people in similar circumstances. As a society it behoves all of us to treat each other with care and respect. We never know what challenges any individual is dealing with and we should NOT assume the person we are about to shove in the back is as healthy as we are.

Rant over.

You Look So Healthy!

Yesterday a fellow chronic illness patient shared she was in tears. A friend had told her she looked “so healthy”. So why was she crying? Even she was not quite sure, but several of us put our heads together and discussed the situation.

Tell us we look stunning, beautiful, handsome (men are chronic illness patients too), a fashionista even. Please be careful using the word healthy. If you have a friend or family member who has a terminal or chronic condition, perhaps reach out and ask them what compliments are safe. You want to compliment your relative or friend without using a word that can trigger sad feelings. For some it is the word “healthy”, for other patients there may be other words. Perhaps for a man “strong” maybe a trigger. Men – feel free to chime in with suggestions in the comments section!

If I put myself in another’s shoes, a healthy person’s shoes, imagining I know nothing about being sick, I possibly could think, “What would a sick person like to be? Healthy, that is what my sick friend would like to be“. I can see this imaginary healthy me thinking I am giving positive vibes to my sick friend. When I say “you look so healthy” I think I am being complementary. I am hoping to cheer my sick friend up.

However, for many of us sickies (also known as #spoonies), healthy is a bridge too far – yes some of us MAY go into remission or get close to it, but someone saying we look healthy can be a strong reminder we aren’t – and in many cases never will be again. It can hurt.

The word healthy can play tricks on us too. We can feel like you are doubting whether we are actually sick: that can feel as if our illnesses are being invalidated. One thing we need so much is the understanding of our loved ones. If we feel doubt from you, even though you don’t mean it, it hurts emotionally.

You look SO healthy” can make us cry because we want what we can’t have. No matter how hard we work at accepting our situation psychologically, no matter how hard we work physically at strengthening our bodies to manage the pain (if we can – I am lucky, I can, some can’t), most of use DO NOT like being “sick”. We don’t like not having the energy or mobility we used to have. We don’t like the side effects of the medications we take, or the myriad of potions and lotions we may have to apply. We don’t like having to cancel social events because of a condition flare. I could go on.

In a support group I am a member of I often feel a bit of a fraud – many of the members are much, much sicker than I am. To put that in perspective, this is my list:

  • rheumatoid arthritis (but maybe psoriatic arthritis, or both) (autoimmune)
  • hyperactive thyroid, multi-nodular goitre, Graves disease (autoimmune)
  • diverticular disease (most of us have some degree of this, by the way)
  • sliding hernia
  • bulging disc, lumbar spine
  • herniated disc, lumber spine
  • arthropathy and hypertrophy of various facet joints
  • scoliosis lumber spine
  • photosensitive eczema (result of medications)
  • other skin stuff going on (medications again)

That’s after I’d already lost all the “optional extras” (as one professor put it): tonsils, appendix, uterus, gall bladder.

HEALTHY people will read that list and probably have a reaction along the lines of “OMG, how are you still alive?” Easy, actually, but I’ll get to that! I am one of the healthiest sick people you’ll likely meet and I am well aware of that. That is MY list of conditions – yet compared to many other members of the group, I am in fact “healthy”. I do strength training (I can leg press 160 kg), I swim, I am on NO pain medication. Yet I cannot work full-time, changing the bed linen flattens me, I have mysterious losses of energy unexpectedly, I struggle psychologically to accept I am “sick”. So many chronic illness patients have so much more to contend with than I do.

One member of the group, Sam, suffers spontaneous bone fractures. Can you image that? You are just sitting there, doing nothing, and your pelvis fractures. Or the bones in your feet. That patient cannot go and do what I do, it is just not physically possible for her. Does she look healthy in pictures? Sure – she looks stunningly healthy! Is she how she looks? No.

This overseas video is one that visually represents what I am trying to say.

A new hairdo, a manicure and great makeup can make us feel better, just as it can for a healthy person, yet many of us have a nagging thought in the back of our mind of how long can we manage it? For example, I am losing fine motor control in my hands. My manicured nails are one of my “pick-me-up” techniques.

nail polish

Yet it is taking me longer and longer to do them, trying to keep my hands steady. What will I do when I can’t do it any more? Pay to have it done? Maybe not – there are all those hidden, unrecognised costs of being sick, you see. One of the reasons I have a partial plate rather than dental implants is even healthy people have difficulty with manual dexterity as they age. Manual dexterity is important in caring for dental implants. With rheumatoid arthritis I wasn’t going to take the risk.

I’ve mentioned before the time a co-worker told me not to worry about the calories in a mini-muffin, I’d work it off in no time – ummmm – no, I can’t. Yes, I exercise, but I can’t do the level of exercise I LOOK as if I can do!

I asked two members of the support group if they would permit me to use photos of them looking absolutely stunning to illustrate this article. Both declined because the state of their health is not public knowledge – they are concerned about the impact being on a public website such as this may have on their jobs. One in particular is striving for remission and may be able to put all this behind her. I mention this to illustrate how society’s expectations can lead us to hide our conditions, keep it secret. Yet in doing so, we may exert ourselves more than we should and hamper our efforts to get well (or slow/halt disease progression), where that is possible.

Michele Lent Hirsch has written a book about being young, sick and female, “Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine,” which came out late last month.

The following is an extract from an interview with Hirsch:

MW: Right. In the book you talk about a job where your boss told you to “leave your cancer at the door.”

MLH: There couldn’t be really a worse reaction. And a lot of the women I’ve interviewed have talked about how they work, just like I did in that job, harder and longer hours just to compensate for what seems like people treating them like they’re not a worthy employee anymore.

And what’s especially horrible about that is, again, women are already getting paid less, getting treated more poorly at many workplaces across this country.

That kind of behavior is only going to enforce women trying to hold it all in.

Patients working longer hours, as Hirsch describes, to “prove” they can cope, are NOT going to be spending the time required to keep their bodies healthy and their conditions under control. They are going to be exhausting a body likely already energy depleted. Remember how I said I am one of the healthiest sick people? But I don’t work full-time, let alone work extra hours because I put my health first.

To my chronic illness readers, please share other phrases you find distressing in the comments. I especially invite men to share, as I don’t have much experience of being a man.

EDIT: A reader mentioned to me “Oh, but you’re fine now!” is something they describe as “That’s the killer”. I agree. No, we are not fine. Even if we are lucky enough to go into remission, we can never stop monitoring, never stop doing all the things that got us to that point without risking a relapse.

A friend of mine is this weekend taking part in a huge walk for Oxfam. Seven or eight years ago she could barely walk to the end of the street. With the right medical treatment her condition is now under control to the point, like me, she looks perfectly normal and does lots of perfectly normal thinks – like walk for Oxfam. But no, neither of us are “fine now”. We are forever vigilant and can never stop our self-care.

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.

Chronic Illness Writings by Other Authors Plus a Book

While I strongly advocate exercise where at all possible, there are many other aspects to suffering from chronic conditions. Today I am sharing some of the non-exercise related writings I have been reading recently that I hope readers may find interesting and helpful. We are all on a road, treading a path – sharing our journeys can be very worthwhile. Also –  you deserve a break from my lengthy ramblings!

Sam Moss is a fellow Australian experiencing far greater disability than I am – we are at opposite ends of a very wide spectrum. Sam had a very successful, award-winning career until she was unexpectedly forced to medically retire.

Sam recently wrote a terrific article I highly recommend, Is Acceptance Just Resignation? Readers may remember the ‘A’ in the PACT pain management program I attended. The ‘A’ was for Acceptance. Sam draws a lovely distinction between acceptance and resignation. Sam builds on that article in a follow-up, Loves and Losses. I do like the 5 G Change Model.

The second piece of writing I am highlighting today is They’re called liars and malingerers because they face pain you can’t see by reporter Julie Power about a longtime Twitter co-follower. Andrew did not fall sick or inherit a condition like so many, he was the victim of a car accident. While many of us are able to at least produce blood tests, MRIs or other diagnostic test results to substantiate our situations, Andrew cannot and has suffered as the headline indicates. Some chronic condition patients suffer similarly, such as fibromyalgia patients. Chronic Fatigue Syndrome (Myalgic Encephalomyelitis) used to be similar – I have a very dear friend who had CFS/ME back in the days when many still thought it was “all in the head”. Now research is proving it is very definitely real. Andrew’s experience has been complicated by the legal issues surrounding seeking compensation for his injuries, but the negativity he faces is something many with chronic diseases face.

Harmoni Raie is another Australian chronic illness patient who really struggled with the mental health aspects of learning to live this new spoonie life. Harmonie recently wrote, Change Begins With Us – Be A World Changer! which is uplifting.

When Doctors Don't Listen

Lastly, there is a book I spotted in the work library one day, When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests. I am in the process of reading it and I am finding it extremely interesting. Although written in the context of the USA health system, there are lessons for Australian patients and Australia’s health system. It is written by doctors, expressing concern about the modern cookie-cutter, recipe approach to medicine. My doctors are all great, very good listeners. The fact I am reading this book must NOT be taken as a criticism of my own doctors, I am reading it out of interest!

Don’t give up on the exercise though! Call, text or email if you’d like to discuss how exercise may help you.