No Remission for Me – At Least Not This Time

My experiment didn’t pay off. Am I sorry I did it? Not really, because knowing me, had I NOT done it, I would have always wondered. That is a very personal characteristic: it would not apply to everyone! While I am a firm supporter of modern medicine, I don’t like taking any more medications than absolutely necessary – had I not done that three month wash-out, I would have always wondered was I taking medication when I didn’t need to. Now I know! I need a medication!

The one thing I have learnt is this autoimmune arthritis, currently considered to be psoriatic arthritis, has a tighter grip on me than I thought.

So what happened? I was fine until about two weeks before the three month wash-out period ended. First I got a sore toe on my right foot. I thought nothing of it as I had been wearing in some new shoes plus it was possible I’d stubbed the toe without realising it. Then I got a VERY sore brachialis origin – thought maybe I’d strained myself in the gym, but couldn’t quite figure out what I had done, given I am so careful. Plus my right shoulder was tiring when I was swimming.

A week before I was due to see my rheumatologist, my left foot started swelling. Right at the moment I have only one pair of shoes I can wear and that is only because they are sandals with adjustable straps! These are my feet compared after a day at the office.

Today, I have a sore toe on my right foot, a swollen left foot, my whole right shoulder and upper arm are causing me issues and the discomfort is radiating up my neck. My fingers are a little stiff, but nothing too bad. My knees are grumpy, both of them. I’d being trying to avoid prednisone, but I’ve capitulated. Only a small dose though, to tide me over.

On a good note, my skin and nails look fantastic!

Two weeks ago I started methotrexate. Too soon yet to feel any improvement: so far no side effects. My dermatologist will be very happy – he wanted me on it straight away.

I am sad I’m back on medication, but I am grateful there are medications that will help. This is my third medication since the start of 2015. I am hoping this one will improve the fatigue and the brain fog, both of which have always been a bigger problem for me than actual pain (until right now, that is).

The brain fog is partly why I haven’t been writing – thinking is actually a struggle, particularly at the moment. Aside from that, I was wary of writing that I was fine until the jury was in at the three month mark. I knew I was taking a risk and did not want to sound celebratory until I knew whether I had anything to celebrate!

Will I do it ever again? I think, given my age, probably not. If I can get the brain fog to lift, I’d be ecstatic, as it is the one symptom that I find really soul destroying. I’m  good at managing the level of pain I experience, it is the brain fog that drives me nuts. I used to be an avid reader – now I am not simply because the combination of fatigue and brain fog makes it a challenge rather than enjoyment. Mind you, it is all relative I suppose. I was speaking to a contact the other day, bemoaning the cognitive impact. The response was something along the lines of, “Well, I’m glad I didn’t have to debate you before you got sick, you’re sharp enough now!” Maybe they were just trying to be nice. But us sufferers, we feel the loss very keenly.

The fatigue is helped by exercise, but with swollen foot and dodgy shoulder, I’ve been instructed to rest for the moment. This is SO not me, I’m struggling with abiding with that instruction. Mind you, it is difficult to go to the gym when my runners don’t fit!

In another two weeks I can hope for some improvement. Regular blood tests are again the order of the day, something else to fit into my schedule.

I have four weeks of UV B light therapy to go. Although it only takes a couple of minutes, it does require careful scheduling and at three times a week I will be glad when it is over: I won’t have to dash from work to the dermatologist at a specific time. A little flexibility will be restored!

Yes, I’m disappointed, but I’m happy I had the opportunity to try. Many people are too unwell to even consider such a trial. The fact I could, I am taking as a positive.

Now, just let me get back in the pool!!! I miss my swims!

Robyn Dunphy2 Comments

I Am Medication Free! For Now, Anyway……..

Right now I am medication free! No, I have not forsaken the wonders of modern medicine in any way shape or form, but in careful consultation with my rheumatologist I am taking nothing at the moment. How long this will be the case, I am unsure: we will reassess in February. If anything goes belly up, I’ll just make a phone call.

NEVER CHANGE YOUR MEDICATIONS WITHOUT YOUR DOCTOR’S APPROVAL.

Why is this happening? The medication I was on, my second inflammatory arthritis medication, was GREAT for the arthritis. However, it is considered not so great for my skin. This is my left arm a couple of days after the biopsies. This is the worst patch, always has been the problem area. Ignore the scar circled in black – that was the result of having a run-in, literally, with a broken fire extinguisher. The area circled in green is one of the biopsy sites.

Why is my suture not covered? Well, the steri strips started to come off, so I soaked them off. I can not use bandaids of any sort any more, my skin is so fragile – I remove them and the skin comes with them. Rather nasty, so I just don’t go there. It is bandages after bllod tests these days.

About two years ago we investigated my skin and it was then diagnosed as photosensitive eczema. It looked a little different back then. This November I have a completely different diagnosis. This does not mean the original diagnosis was incorrect – things change. In 2016 I was on different medications. Around the time of that first diagnosis I changed my arthritis medication and early this year (2018) I ceased taking medication for my hyperthyroid, having undergone radioactive iodine treatment. So a few changes in the two years.

My skin diagnosis now is atypical psoriasis, believed to be exacerbated (considerably) by my arthritis medication. My dermatologist discussed the matter with my rheumatologist and off the medication it is! I am starting UV B light therapy in the new year – can’t wait! I say atypical because it looks more like subacute cutaneous lupus erythematosus (SCLE) (per dermatologist) than psoriasis, but the biopsies, thankfully, told a different story.

My nails, which usually readers never see due to my passion for polish, look like this. Not all the time, it comes and goes, but the little fingers are particularly unhappy at the moment.

The next medication in line for me, agreed to by my dermatologist, rheumatologist and gastroenterologist, is methotrexate. By the time I saw my rheumatologist, I had been medication-free for a month and I don’t feel too bad at all. I asked about the possibility of seeing how I go without any medication. Other medical professionals are investigating some other symptoms I’m experiencing, some of my blood tests have been a bit erratic – it might be easier to isolate a cause if I’m medication free. That consideration aside, the less medication the better makes me happy. Methotrexate only takes four weeks to “kick in” and I’m certainly not going to be a martyr about it – if I feel I’m going downhill, I’ll be in my rheumatologist’s office very quick smart. I have backup medications in case I flare.

As I have to change medication anyway, it is an opportune time to try and see what happens. My arthritis related blood tests have improved considerably since late 2014 when I was diagnosed.

So how am I finding it? My feet have niggled at me a few times, both my knees are slightly grumpy at night if I walk too much during the day, the base of my thumbs hurt a little bit with certain grip actions (think holding my drink bottle to unscrew the top). If I have a really busy day I do stiffen up at night – but then that is not exactly new, I don’t think it has gotten worse – it is also more likely related to the degenerative changes in my lumbar spine than the arthritis. Other than that, I can’t complain. I swam 1,100 metres today, the first time I’ve managed a swim session over 1,000 metres for quite some time. I did 40 minutes strength training yesterday, my quad strength is actually improving. I did 9,000 steps (accidentally) on Thursday with no ill effects.

My biggest concern is my fatigue/lethargy may return. For me, that was a major problem. Settling the thyroid helped, of course. Now my bloods are indicating my parathyroid is not behaving – endocrinologist appointment in January to try to get to the bottom of that.

The BEST part is I can go out in the sun – sensibly, of course. I’ve spent two years avoiding any sunlight because of my skin, slathering sun cream from head to toe: slip, slop, slapping to within an inch of my life. Yes, I still have to be Sun Smart, but at least I can be normally Sun Smart now instead of paranoid! I also feel better psychologically: I felt as if I was a constant Seasonal Affective Disorder patient.

I don’t know if I will stay free of medication for the arthritis. I see this as an experiment. I do seem to be susceptible to the side effects of medications so if I can stay as healthy as I am now, I’ll be happy. Any deterioration, I’ll be in my rheumatologist’s office. It takes a while for the drug to wash out of one’s system, so I won’t really know for three months – I’m only a third of the way through.

I am very grateful to my specialists for allowing me to try this. It would not be an ideal option for a lot of patients, I know. I am certainly not recommending what I am doing and would definitely NOT be doing it without having discussed all the pros and cons with my guardian angel doctors. I am monitoring myself carefully.

The physical fitness and strength I’ve slowly spent four years building back up has certainly helped me manage my condition so far, but no, there is no guarantee by itself it is enough.

We shall see – wish me luck!

Robyn Dunphy3 Comments
Tiger Pacing

Pacing THRU, Pacing UP, Pacing DOWN

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

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

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

Pacing THRU

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

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

White Daisy

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

Pacing UP

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

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

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

Pacing DOWN

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

de-conditioning

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

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

Dandelion

Pacing THRU and UP

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

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

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

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

SMART Goal Setting

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

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

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

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

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

Further Reading:

4 Resilient Ways to Cope With Chronic Pain – Huffington Post

Doctors and Exercise – Limberation.com

Robyn Dunphy18 Comments
posture

Is Your Posture Exacerbating Your Pain?

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

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

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

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

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

How are you standing?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Images used under license from Shutterstock.com

Robyn Dunphy10 Comments
chronic conditions care courage consistency coaching

Care, Consistency, Courage and Coaching

Chronic Conditions

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

Care

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

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

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

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

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

breakfast
Breakfast

Consistency

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

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

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

de-conditioning

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

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

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

consistent exercise
Consistent daily steps

Even if you have to dance to get there!

Courage

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

leg press

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

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

Now a gym session looks like this:

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

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

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

Coaching

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

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

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

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

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

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

Contact me for a confidential chat as a starting point.

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

Robyn Dunphy4 Comments

11 Tips for Dealing With Major Disruptions to Your Routine

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Dust if You Must” ~ Rose Milligan

I painted my nails instead of dusting!

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

Here is me in a Melbourne publication in 1998.

Robyn Dunphy5 Comments

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.

Robyn Dunphy6 Comments

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.

Robyn Dunphy2 Comments
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.

Robyn DunphyLeave a comment

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.

Robyn DunphyLeave a comment