Radioactive Iodine – Three Months In

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

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

Initial Reactions

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

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

“That’s your 1RM, you mean?”

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

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

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

Up to Two Months

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

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

Third Month – 70% increase!

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

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

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

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

My swim is also not a problem.

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

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

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

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

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

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

 

Prognosis

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

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

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

Summary

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

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

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

too much chocolate is not self-care

We Need Mental Health as well as Physical Health

As a movement/exercise trainer I write a lot about benefits of physical movement for chronic illness. It is my area of expertise. I am well aware that mental health will affect clients’ motivation to enhance their physical health. Recently I wrote about the financial aspects. As I am a CPA, I’m qualified to write about dollars too.

Today I take a look at mental health. I am not qualified in the mental health field, therefore I refer to those who are. My own experiences may put the advice into context and help you consider whether some support may be helpful or life adjustments may be necessary for your situation.

Queensland Health published 5 steps for making your mental health a priority in 2018 (and beyond) earlier this month. I’m going to talk about those 5 steps in the context of having a chronic condition.

Understand what mental health actually is

This is important. If we don’t have an understanding of what mental health actually is, we won’t recognise when we need support. We already have a physical condition: diabetes, lupus, fibromyalgia, inflammatory arthritis…..the list is very long. Maybe we have more than one condition to manage. Our life may have slowly or suddenly changed and those changes can bring with them depression or anxiety. There can be a sense of loss if a patient has to reduce working hours or give up work entirely. The financial concerns resulting from that life change can bring considerable stress. There are times, especially in the early days, when it can feel like a downward spiral.

I remember what it was like in the early days, when I was not yet on medication as the specialists investigated and the diagnostic process chugged along. It. Was. Tough. I did have faith there was light at the end of the tunnel, but that light seemed to be a tiny speck in the distance at times. Now I can leg press 160 kg – that is a long way from the days when I walked five minutes, three times a day. Not only am I physically healthier, I am also mentally stronger. I feel in control, which I certainly didn’t in late 2014.

Just as our physical health can affect our mental health, the reverse is also true: our mental health can affect our physical health. If we reach a point where we feel there is no hope, then we may stop doing the very physical things that would give us hope and a better quality of life. Sometimes it really is the old chicken or the egg question.

Being mentally well doesn’t mean you don’t experience ‘negative’ emotions or reactions, like sadness, anger, grief or frustration. Similarly, being mentally unwell doesn’t necessarily mean that you can’t experience emotions like happiness or excitement, go to work or school, or have relationships.

Having mental wellbeing means being able to experience all the ups and downs of life and cope with them in a psychologically and emotionally healthy way.

Please read the full article for the clinical definitions and a broader explanation of what constitutes mental wellness.

Cultivate mental wellness

For physically healthy people, this may not be something they have to think about too much. There are mountains of research showing that physical exercise helps maintain mental health. Healthy people are out there playing tennis, running, cycling, gyming and swimming with gusto. Us? Maybe not so much, at least not at first.

We can usually eat right. Sleeping right may be affected by pain.

Another important aspect is finding our purpose – but this may just have been taken away from us: we have to find a new one. If we loved our job, for example, and can no longer do that job, this may affect our sense of purposefulness.

You can find more resources about looking after your mental health on the Head to Health website. This Australian Government website focuses on four broad aspects of life that can impact your mental wellbeing: physical healthconnectednesspurposeful activity, and feeling safe, stable and secure.

Find ways to decrease stress

This is something I have written about in the past.

Queensland Health says:

Stress can impact anyone and can affect your mental and physical wellbeing. While a little bit of stress can be a good thing, helping you to focus and perform well under pressure, ongoing stress is not healthy for your body or mind.

Let’s not beat around the bush – finding out we have a chronic disease IS STRESSFUL! Apart from the medical advice that stress may cause condition flares, which we don’t want, stress can impact our mental health and the vicious cycle starts. It is important for physically healthy people to manage their stress: it is absolutely vital for chronic disease patients to manage stress.

Take time out

Strongly recommend this one. With caution. For anyone with a chronic condition, self-care is critical. Brianna Wiest covers this well in This Is What ‘Self-Care’ REALLY Means, Because It’s Not All Salt Baths And Chocolate Cake. For me, I might want it to be all hair appointments and manicures. Although I did have 20 grams of Lindt chocolate today.

True self-care is not salt baths and chocolate cake, it is making the choice to build a life you don’t need to regularly escape from.

And that often takes doing the thing you least want to do.

So while we do need to take time out (have that manicure, watch a favourite TV program or enjoy a nice glass of wine), because we have to avoid the Boom Bust cycle, we need to be careful not to take so much time out that we sacrifice our very necessary self-care. We can no longer do as much in any given day as we could in the past. We can’t catch up tomorrow, necessarily.

Get help when needed

YES YES YES!!! From my personal experience I recommend talking to your GP early if you feel you are experiencing difficulty coping. Support such as Mental Health Care Plans are available under certain circumstances to help with the costs. Don’t keep soldiering on, support is out there, use it. I find just being able to vent in a safe environment immensely beneficial. Being proactive about our mental wellness is very important at any time: once we are a chronic disease patient it is absolutely critical.  

Signs it’s time to seek professional help include:

  • you’ve been feeling sad, down, angry, depressed, numb or generally ‘not yourself’ all the time, for two weeks or more
  • the way you’re feeling is affecting your ability to cope at work, school or in your relationships.

You can start by talking to your GP, a trusted friend or family member who is a good listener, or by calling a helpline like beyondblue or Lifeline. If it’s an emergency and you think your life or someone else’s life is in danger, always call Triple Zero (000) for an ambulance.

Remember that only a trained health professional can diagnose you with a mental illness and offer treatment services.

Other Resources

“You can’t stop the waves
But you can learn to surf.” ~ Jon Kabat-Zinn

The Daily Manic – corporate change consultant and advisor Jayne was diagnosed with life changing illness at the age of 44. She now uses her change management skills to help people slow down their lives, whether that be for reasons of illness or simply because they want to slow down.

If you are willing to see if physical activity will help you manage your condition/(s), do check out my current competition. You may win eight weeks free training to get you started!

The Costs of Chronic Conditions

A Croakey article, “Out of Pocket Costs: a Critical Health Issue to Watch in 2018” floated past my Twitter stream this week.

It is clear that out of pocket costs are a significant health equity and public health concern; a 2014 report by the Grattan Institute stated that:

“High and rising out-of-pocket costs are one reason that a sizeable minority of people avoid health care. The impact is greater for people on low incomes, in rural areas and who have poorer health status and disabilities.”

The article also links to an online survey launched by the Consumers Health Forum of Australia, of which I am a member, “to find out more about the impact of out of pocket costs  to help inform its work on a new Ministerial advisory committee.” I encourage readers to complete the survey.

I completed the survey from a personal perspective. One of the first questions was were the out-of-pocket expenses incurred in or out of hospital and the survey branched based on your response. I made the comment (in the appropriate box) that this was not representative of the ever increasing number of the population suffering chronic conditions. We have out-of-pocket expenses ALL the time, on a weekly, if not daily basis. We have those out-of-pocket expenses in and out of hospital. I am one of the healthiest chronic condition people around, but I often joke I work (my reduced hours) merely to pay my medical team and related costs. Those who are severely affected by their condition or conditions will have higher care needs and less ability to work: it becomes a vicious cycle. Can’t work, can’t afford to get well, not well, can’t work. Condition progression and the downward spiral continues.

Please note, overseas readers, I am writing ONLY of the Australian situation.

If a patient is in the public system and has a concession card (disability, pension, etc) they either see specialists through the public system or MAY be bulk-billed by private specialists if they are lucky (I was, one of my lovely doctors bulk-billed while I was unemployed and studying). Prescriptions for medications are filled at (current rate) $6.30 instead of the full PBS price. Woe betide you if you need anything not on the PBS, which I have at times. Most of my “standard” prescriptions run between $21.65 and around $32.00. As I have reduced my dosages, the ‘scripts last longer. For example, I started on 400 mg (two tablets) a day of one medication. I am now on half that. My thyroid medication has now been completely eliminated due to the radioactive iodine treatment, so that is a saving!

But there are other things we need that are not covered by anything. When I was first diagnosed back in late 2014, my Vitamin D level was “undetectable”. I must take a Vitamin D supplement every day, as ordered by my specialist. I am not allowed out of the house without sun protection, I have sun screen in my desk drawer, my gym bag, my swimming bag. A special one for my face. I am not allowed to use soap, I must moisturise – dermatologist specified products. These are out-of-pocket expenses that just get ignored by the powers that be, both medical and political.

Given I have chronic conditions, why do I stay in the private system? I have developed trusting and valued relationships with my treating specialists and I want to maintain that continuity of treatment. I do not want to see a different consultant every time I turn up at a public hospital consulting room. Yes, that is my choice: a choice I make for the benefit of my health. I believe anyone with a chronic condition should be assured of continuity of treating specialist, whether public or private. The peace of mind that comes with continuity is a massive psychological support.

I have endoscopies almost every year, sometimes more than once. My hospital excess is $500 a year, paid on the first admission. I’ve rarely paid anything else for hospital treatment: $117 once, I believe. I get the procedures done at a time that suits my schedule, usually within a week of the procedure being deemed necessary. To me, personally, that is worth $500 a year. Having said that, health insurance is about to go up, by twice as much as wages. I don’t know if I can continue to justify the expense. But if I drop it, not only do I lose the benefits I’ve just outlined, the tax man will hit me for not having private health insurance. We can’t win.

The Medicare Safety Net threshold helps with doctors’ bills, once I hit the threshold each year (and with seven specialists, I do). There is a PBS Safety Net too, but I never hit that as the medications I am on (luckily) are not horrendously expensive. I have a friend who, some years ago, was on a drug that was NOT on the PBS at that time. It cost her $3,600 every six weeks. She fought to have the drug placed on the PBS schedule. Like me, she has chronic conditions and reduced working hours. Her savings were somewhat depleted by trying to stay alive at the time.

Once you have a chronic condition you qualify for Health Care Plans. This can be physiotherapy, psychology etc. Speak to your GP to see what you may qualify for. Once on a Health Care Plan, a Medicare rebate is available for a limited number of services a year. While this is great, it certainly doesn’t cover the number of services that may be needed to stay well at an optimal level. Chronic conditions are DAMN HARD WORK to manage and, if you are really lucky, defeat. Also expensive.

Thankfully, MOST blood tests are also bulk-billed, although I have had blood tests that are not covered and have incurred out-of-pocket costs for blood tests. Most x-rays, CT scans, ultrasounds, MRIs etc are also covered, but again, not all.

None of the above takes into consideration the other costs of being healthy. Move, they say; get exercise, they say. Yes, I agree. I am a living, breathing advocate of exercise, for Movement As Medicine: Limber Up to Live Life. But you know what? I don’t come free, because I have my own medical costs to meet (plus I do like to eat). The gym costs money, swimming costs money – not just the fees, but the equipment as well. The pool staff are not overly impressed by naked swimmers. Then I have a variety of equipment at home:

  • two foam rollers
  • small hand weights
  • swiss ball
  • resistance bands
  • thera-bands
  • spikey massage balls.

None of those were free.

I also have my special kyBun shoes which I swear by. I believe they have contributed to the improvement in my back, allowing me to avoid radiofrequency facet joint denervation recently. I also think getting my thyroid under control, resulting in muscle strength returning, was another contributing factor. These shoes are not cheap, yet they are a vital part of my personal “get well, stay well” program. They are also better than my needing a walker or wheelchair.

kyBoot shoes

Food costs are not considered medical either, but if we want to get and stay healthy, we need to ensure we are eating the right balance of nutrients. Junk food is out. Lots of fresh green leafy vegetables and lean meat in most cases (there are exceptions). Fresh fruit. We have to watch the nutritional labels on everything and sometimes what is best for us is far from the cheapest.

If we do get ourselves healthy we are not a drain on the “public purse”. We stay off the Disability Pension, we use less medical services (prescriptions, x-rays, scans, Medicare rebate, hospital admissions, etc etc etc).

In my view it is definitely in the public interest to financial assist chronically ill patients to be the healthiest they can possibly be. That includes, if necessary, supporting their access to appropriate exercise, healthy foods, dietary supplements as recommended (e.g. my Vitamin D and fish oil). Get patients to a point where they able to regain quality of life and suitable employment, enable independence and self-sufficiency. Much cheaper to the community in the long run than a life on a pension AND, MORE IMPORTANTLY, so much more rewarding for the patient.

Out-of-pocket health costs are NOT just the difference between the doctors’ bills and the Medicare rebate or the prescription costs. There are so many other aspects to fighting chronic illness and winning.

Early intervention, early treatment, is paramount. Yet if people put off going to the doctor for a year or two, the disease can be merrily progressing. Some patients, if things are deteriorating slowly, tend to just get used to it until one day we reach a point of loss of functionality or pain that forces us to an emergency room or our GP. If the patient is in a rural area or is a low income patient, that delay is more likely. How much damage to our body has happened in that time? We may even put functional changes down to the aging process, as I did initially. Guess what, I was wrong.

I hope the new Ministerial advisory committee referred to above considers more than just the obvious. Will they?

How expensive is staying well for you? Are you prevented from doing what you need to by the cost? Please share.

EDIT Jan 28, 2018: Two other non-medical costs of chronic illness are:

  • the need for additional heating and or cooling – e.g. I am severely heat intolerant, symptom of one of my conditions, my air-con costs are therefore elevated AND as I have reduced working hours, I am home more often than a healthy person;
  • transport costs to and from the various service providers we all attend on a regular basis (physio, gym, pool, doctors, pharmacy, pain clinic – the list is extensive). This may be public transport fares or fuel for our car.

Yes, these are costs everyone has, but for those with chronic illness the costs can be increased considerably, thereby reducing the patient’s ability to afford other support that would assist them in condition management.

Competition: Free Training to LIMBER UP!

ENTRIES NOW CLOSED!

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

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

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

Rules and entrant criteria

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

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

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

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

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

Make 2018 YOUR Year for SMART Goals

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

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

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

SMART Goals

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

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

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

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

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

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

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

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

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

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

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

Kyboot

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

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

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

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

Have a great time over the break! Stay safe!

You CAN do it!

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

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

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

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

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

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

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

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

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

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

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

Coping With Christmas!

Christmas is a time of family get-togethers, great food, fun, laughter, presents and perhaps a glass or two, or three of wine or other festive cheer of your choice. Often there are lunches with one family, then travel to dinner with another. There may be picnics and BBQs on days either side. Excited children waking early to open presents.

During the month of December there is shopping to be done, decorations to be hung, the tree has to look perfect.

SLOW DOWN!!!!

Chronic conditions don’t take a holiday over Christmas and New Year – they have this remarkable ability to keep on keeping on.

Here are my tips for keeping on track during the holidays. Click on the links provided for more information!

Avoid the Boom Bust Cycle

This is the very time of the year you want to ensure you avoid the boom bust cycle.

This is the very time of the year I hope your friends and family understand the activity limits you set for self-preservation.

Don’t try to do EVERYTHING, don’t try to be perfect or to meet social expectations. You know your limits, adhere to them.

It goes without saying not to leave things to the last minute – plan out the month of December carefully so you don’t overdo on some days.

Watch the Calories!

Ensure you pay attention to your calorie intake. The festive season is one where we can easily indulge and spend the next month paying for the privilege by increased pain levels in our joints.

Keep Moving!

While it might be difficult to keep up all your exercise routines every day, please ensure you maintain your daily stretching.

Sun Protection is a MUST!

Remember to slip, slop, slap! It can be easy to forget your sun protection when partying. Don’t!

Have Fun

There is no link for this tip – just have fun, enjoy your friends and family.

Merry Christmas, Happy Holidays, Happy Festive Season.

If you aren’t exercising yet, you are still working up the courage, make a New Year’s resolution to call or email me in January.

When Treatment Throws Rocks on the Road

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

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

Triple Check Any Timing Advice

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

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

Ask About Your Specific Activities

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

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

Make Sure You Are Advised Of Any Possible Health Effects

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

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

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

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

Keep Moving As Much As You Can

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

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

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

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

Summary

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

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

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

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

Good luck!

8 Steps to Retain/Regain Quality of Life

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

I also watched “Pushing the Limits” on Insight SBS. As I listened to these extreme endurance athletes, I could see a link between what I and my fellow patients learnt in the Pain Management Program and what these athletes do to push through. Perhaps we need to look at ourselves as endurance QOLs –  Quality of Life is the goal we strive for, not necessarily running 3,100 kilometres in 45 days! Our mental challenge can be just as extreme, even if our physical achievements are not.

The 8 Steps

Step #1: Don’t Compare Yourself to Others

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

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

Comparing ourselves to others is not helpful.

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

Step #2: Don’t Talk Negatively About Yourself

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

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

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

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

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

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

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

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

Step #4:  Do Something for Someone Else

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

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

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

Step #5:  Unplug

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

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

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

Step #6:  Practice Gratitude

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

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

Robyn, Robin and Moira – Perth

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

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

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

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

Step #7:  Grow Yourself

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

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

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

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

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

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

Being an Extreme QOL

The full episode can be viewed at SBS On Demand.

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

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

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

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

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

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

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

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

EXTRA Slip, Slop, Slap Needed!

While the Cancer Council reminds us ALL to ensure we have adequate protection from the sun, those of us with chronic conditions need to be extra, super duper, especially careful.

One of my drugs comes with this little warning sticker.

warning, photosensitive
Warning Label on prescription meds

Let me tell you, that word “excessive” can be very open to interpretation. For some of us, that can be a whole 10 minutes. While I don’t enjoy sharing bits of my body openly like this, in the interests of education, I am doing so here. This is a snapshot of one of my breasts, I hope suitably cropped to retain a health focus!

sun exposure

That was THREE weeks after the actual exposure. I finally went to the pharmacy and asked if they had a cream I could use.

Knowing what else I was on, the pharmacist, in a very firm voice said, “Will you just go to the doctor? Please?” I mumbled, grumbled and complained, but I went.

Doctor says, “I need to send you to a skin specialist.”

I reply, “NOOOOOOOOO! I see enough specialists already! Can’t you prescribe something?”

Anyway, the point is: SLIP, SLOP, SLAP. Extra!

Sometimes it is our meds, sometimes it is the conditions. Sometimes it is a combination. Check your meds, check the symptoms of your conditions.

Hyperthyroid has heat intolerance as a symptom.

 

hyperthyroid, heat intolerance
Source: http://www.thyroid.com.au/thyroid-disorders/graves-disease/

Here is just one paper on PubMed discussing sunlight interacting with drug medications.

The interaction of sunlight with drug medication leads to photosensitivity responses in susceptible patients, and has the potential to increase the incidence of skin cancer. Adverse photosensitivity responses to drugs occur predominantly as a phototoxic reaction which is more immediate than photoallergy, and can be reversed by withdrawal or substitution of the drug. The bias and inaccuracy of the reporting procedure for these adverse reactions is a consequence of the difficulty in distinguishing between sunburn and a mild drug photosensitivity reaction, together with the patient being able to control the incidence by taking protective action. The drug classes that currently are eliciting a high level of adverse photosensitivity are the diuretic, antibacterial and nonsteroidal anti-inflammatory drugs (NSAIDs).

Not all people will be susceptible. Two people could take the exact same medication and one be photosensitive and the other not. The same with symptoms of conditions: not everyone has the same symptoms. Unless you know for sure, it pays to do your research BEFORE you get over exposed.

My arm has had a problem for some time, as it keeps getting exposed. I initially thought I had got sunburn on that arm driving around on a beautiful winter day in August with the roof down on my car. It just never would heal completely. I have noticed a vast improvement since I stopped one of my drugs recently. I am monitoring progress while still applying the treatment the dermatologist prescribed after I was diagnosed, via biopsy, with photosensitive eczema.

photosensitive

That photo is not particularly bad, but I think you can see the lesions. While sun exposure would cause it to flare up, it is/was also heat sensitive: when I work out at the gym, those areas would become bright red.

In Cancer Council ACT’s recent media release, Dr Andrew Miller, President, Australasian College of Dermatologists is quoted:

“Melanoma rates in Australians aged 40 and under are dropping and the children of today are our most SunSmart generation ever. However, it’s a real concern that sun protection behaviours overall don’t seem to be improving and that over 2.7 million Australians are putting themselves at risk of skin cancer by getting sunburnt on summer weekends.”

A media release from Cancer Council Victoria states:

New data from a Cancer Council Victoria survey shows more than a third of Victorians do not know the correct indicator of sunburn risk – putting themselves and their families at risk of sun damage and ultimately skin cancer.

The survey found 22% of Victorian adults aged 18-39 incorrectly selected temperature as the most useful measure to calculate sunburn risk for the day, while 8% thought cloud cover, wind conditions or humidity were sunburn indicators, and 9% didn’t know which measure to use.

Just 61% were able to correctly identify the sun protection times or UV level as the best measure to determine sunburn risk.

Of course, all of that is for normal people! We spoonies have to be extra careful.

I use a Cancer Council sun protection that is non-greasy.

sun screen, sun smart

I initially bought the spray, but I find the nozzle clogs up quite quickly, so I have moved to the cream in the tube. Yes, my cat was trying to get into the photo – she gets into EVERYTHING. The non-greasy is better for work, although that may be all in my mind.

I also have a special dermatologist recommended cream for my face.

sun smart

If I don’t use it, I can go from perfect skin to THIS horror over night. Go to bed perfectly fine, wake up horrified. I’ve learnt my lesson.

sun smart

Have I scared you yet? I hope so, that was the entire point!

Go check your meds and your condition symptoms and SLIP, SLOP, SLAP not just in summer, all the time. I got my arm damage in August.

Do I let any of that stop me being active? No. While my skin may react to sun exposure and heat, I can manage that with suitable sun protection. If I don’t keep moving, I can’t manage my pain. The moving, exercising wins! I will say my gym is in a basement, so I’m safe down there.

Here is proof of me swimming, for no other reason than one of my readers complained on Twitter I had used shots of the pool I go to, but he never saw proof of me actually IN the pool. @MlsMichael, here is your proof. From today. Before the thunderstorms.

Most Australians already know what “Slip, Slop, Slap” means, but for overseas readers:

  • Slip on a t-shirt
  • Slop on sun screen
  • Slap on a hat