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

Radioactive Iodine Treatment Done!

Don’t stop moving! Yes, swallowing a little radioactive capsule can be a bit scary, but my advice is not to catastrophise the event and lock yourself away. A very few patients have reactions, which you will be warned about, but my experience has been as smooth as silk. How well it actually works is yet to be discovered, but I’m hopeful of a good outcome.

As I have eleven days off work now I am going to catch up on my exercise! (Edit Nov 28 – see update at end of this article). The last week or so has been quite challenging with my thyroid doing whatever it felt like. To quickly recap, the process is:

  • Go off the hyperthyroid medication
  • 5 – 7 days later have a nuclear scan
  • Capsule ordered from supplier
  • A few days after nuclear scan, capsule is administered

Readers who have kept track to date on Hyperactive Thyroid Won’t Behave will be aware I was trying to fit in a biopsy between my Monday nuclear scan and my Friday radioactive iodine consumption.

As it turns out, once on the table for the biopsy, it was determined I didn’t met the criteria. A nuclear scan is a functional test, while the ultrasound is the structural test. The two need to be read in conjunction – once they took a look at my thyroid with the ultrasound, they were unable to confirm the nuclear scan suggestions, so I escaped. No cold nodule confirmed, therefore no biopsy.

Mind you, while the clinicians (of various disciplines) were busy making phone calls all over town to confer, I was sitting in trepidation, robed in yet more very attractive medical attire as you can see below.  If I look like I’m thinking “what next?”, it is because I was!

Waiting

That was Wednesday! Thursday I really wasn’t well and left work early (again). This was the most difficult part for me, the not feeling well and therefore taking time off work (as I mentioned in my last update). I slept very badly on Thursday night. Was this because I was a little worried about the treatment, or was it typical hyperthyroid sleep disturbance? I certainly didn’t feel worried, so I’m going with the latter. By then I had been off my thyroid medication for eleven days.

When I got to work Friday, I was told to go home. I had originally scheduled the capsule taking for 5:00 pm, the end of the work day. Given I was told to go home (they were right, I’d had very little sleep!) I called Nuclear Medicine to see if they could do me earlier.

Well, usually they could – but not on this particular Friday as the capsules had not yet arrived. But were on their way. So I trotted over and waited.

The capsule arrives in a little green bottle with a radioactive material warning sticker.

Container

A couple of weeks before I had received an information pack outlining the food restrictions for the week prior and the isolation restrictions for specified periods after treatment. The isolation periods depend on the dosage. As I had 15.7 mCi, I am stuck with the longest isolation times.

I talk about the information below, but not in totality – if you are having this treatment, MAKE SURE YOU READ YOUR PATIENT INFORMATION BOOKLET! I’m talking in general terms to give readers a feel for the process.

The food restrictions are around ensuring a low iodine diet for the week preceding the treatment. I am assuming, in my innocent patient mind, this is to ensure when we do take the capsule, our thyroid says something along the lines of “OMG, gimme, gimme that iodine, I’m STARVING“. The formal documentation says, “In order to ensure that the radioiodine is properly taken up by your thyroid tissue…”, but I like my description better.

Not allowed were: bread or other baked goods, milk or other dairy products, fish, egg yolks, soy products, green beans, iodised salt or stuff with bright red food colourings. Meat alternatives such as vegetarian sausages were also not allowed.

I was allowed meat (beef, pork, lamb, chicken) egg whites, homemade bread (made without iodised salt), breakfast cereals, fresh fruit, vegetables and unsalted nuts.

Beer and wine were OK, but milk and tea had to be black.

I was eating bananas and cashews for breakfast because bacon and eggs on toast wasn’t allowed (plus I don’t bake bread) and how was I supposed to eat cereal without milk or yoghurt?

Fast for at least two hours prior to treatment and at least two hours after treatment. It was recommended to me I fast for four hours after treatment. I was STARVING (after a banana and cashews for breakfast and the rescheduling meant no lunch) so I didn’t make it to exactly four hours.

I have to stay away from children under five years of age and pregnant women for 20 days. Stay away means:

  • avoid spending more than 15 minutes per day within one metre of another person and maintain a distance of greater than two metres whenever possible
  • Sleep alone, abstain from physical relations
  • Avoid kissing.

The restrictions apply for 14 days for non-pregnant women and others over five years of age. Work restrictions depend on what sort of work you do, how close you work with other people and so on.

I have to do things like double flush the toilet (men should sit to avoid splashing – that made me giggle).

There are rules around washing bed linen and food preparation, most of which is not a concern as I live alone. The pamphlet includes twenty FAQs covering such questions as going to the movies, receiving visitors at home, catching taxis and using public transport.

The person administering the capsule spends quite some time with you to make sure you understand everything. Mine also understood my concern for my cat’s welfare and suggested I buy gloves to handle her. So I did. You also need these to pick fresh fruit and vegetables at the supermarket, although I had done a supply trip on Thursday night.

CatProtection

Plus she is not allowed in my room at night. She has a special snuggly bed I bought a while ago in preparation for this event.

I have been worried about the fact this treatment can take three months or more to really work and I have also been feeling so bad without any medication at all. I can’t take three months off work! However, the latest advice I have received is that after four days it is OK to start back on my old meds temporarily – all I have to do is call my endocrinologist if I feel I am not well enough to work without some form of treatment. That is comforting. It also means I will hit my target of resuming Limberation work at the end of November!

So how am I now? Pretty darn good really. See for yourself!

If overseas readers have trouble with my accent, that was about midday, just over 48 hours after my consumption of the radioactive material. I had already walked 7,000 steps going to the supermarket (yes, I kept two metres away from people). I feel perfectly fine, no adverse affects at all. I did not vomit, I’ve had no swelling to speak of and no pain. It occurred to me today I haven’t had a nausea attack either, but that may be merely because up until today I did not do too much. Yesterday it poured with rain here, so walking wasn’t an option and I didn’t want to try going to the gym in case I contaminated gym equipment. I did feel a little weak on Friday afternoon.

I’m monitoring my skin as it seems to be improving now I am off the medication I’d been on for the last three years. If that continues to improve I will share the details another day.

So! Onwards and upwards! May the little capsule beat my thyroid into shape and may I again be full of energy!

Edit November 20: Yippee! I can go swimming today! All the FAQs didn’t cover swimming without contaminating the pool, or returning to the gym. First thing this morning I called Nuclear Med. I can swim today, gym in two more days. Capsule day is Day 0, today is Day 3, gym will be Day 5.

Edit November 28: I may perhaps have been a little exuberant! Then again, that IS me. This week has been challenging – a lot of the time I feel fine, then the lightheadedness/nausea will overcome me. Some days have been worse than others. Yes, I have anti-nausea medication. Yesterday I gave in and rang my endocrinologist who has recommended I go back on my thyroid medication at half the dose I was previously on. My blood test yesterday showed my TSH was very low.

If I am not improved by next week, we will start looking for other causes. I still feel fine most of the time, it is just this darn lightheadedness/nausea that is a problem. I am also heat intolerant, probably due to the Grave’s Disease, and this last week has been around 33 degrees Celsius. We had a cooler day yesterday and then back up to 29 today. I think this has complicated the whole thing!

How I am feeling may well be unrelated to having stopped the thyroid medication in preparation for this treatment, but given it is the one thing that has changed, we have to go through the process of elimination.

Again I stress everyone’s experience will be different. I certainly can’t complain too much, I’ve been walking and swimming, just not as much as usual. I think that’s OK given the circumstances! By yesterday I had been off medication for 22 days and the radioiodine just doesn’t work that fast (unfortunately).

I am back to work tomorrow and hope to manage a full day. Fingers crossed.

This article is written specifically from the patient perspective and should not be interpreted as any form of medical advice.

A Tale of Two Fountains

We are different now. Some of us will regain our pre-illness selves, some of us have an unknown prognosis, some of us know we will never go back. For the moment, all of us are changed from our old selves.

I think of the fountain above as my old self. I think of the fountain below as my new self. Or visa versa, it really doesn’t matter.

Fountain

Just as these are both beautiful and different fountains, in both incarnations I am a useful, valuable person. I just do things a little differently these days. Well, yes OK, some things I might do a LOT differently. So might you.

It is easy to feel hopeless, useless, incompetent and a whole host of other negative words when we face chronic pain or fatigue/lethargy. When we have to set aside time to self-manage our health we may feel guilty because we are not doing other things friends or family may think we should be doing.

Look at the fountains more closely. One shoots water into the sky using, I imagine, quite a lot of pressure to achieve the height. The second fountain does the complete opposite: water gently falls from many small outlets. In both fountains the water is successfully circulating through the system. Both fountains bring pleasure to visitors. Birds stop and drink. Grass grows around them. So it can be with all of us.

Yes, we are different now. With the right support and guidance we can live a meaningful life, despite the pain and/or the fatigue.

Most of the normal people around you will not understand, especially if you have no visible evidence of illness. No-one can see my friend’s cancer tumor. No-one can see my fatigue. No-one can see the pain another friend suffers from fibromyalgia, This was brought home to me personally this week, when I was diligently recording the calories in a mini muffin at a work birthday afternoon-tea. “Oh”, my colleague said, “you can work that off in five minutes, don’t worry about it!” No, I can’t work it off in five minutes because I can no longer do that level of exercise. Yes, I do a lot of exercise, but gone are the days when I could eat anything I liked. Because I don’t look sick, people don’t comprehend the self-management we need to adhere to in order to live the lives we want. We cannot expect people to “get it”, but we can set appropriate limits.

We are still beautiful fountains. We just function a little differently these days.

Change Your Exercises for Safety

The target audience for this article is those who are already gym literate. You know how to do a dumbbell bench press and load the leg press. Your technique has always been good and you’ve never hurt yourself in the gym. You are trying to pick up where you left off, but now you have the complication of our new partner, our chronic illness, or some degenerative change making things a little different.

Here are some personal practical examples to illustrate you can change what you are used to doing and still achieve your goals. No, not your old goals – your NEW goals! The ones you have now for regaining or retaining your quality of life!

Dumbbell Bench Press

As previously mentioned, I have a few problems in my lumbar spine: a bulging disc, a herniated disc and some very grumpy facet joints. I have always preferred free weights. I knew something I was doing in the gym was irritating my back, but I wasn’t 100% sure which exercise. I suspected it was the dumbbell bench press – not the actual exercise, but getting off the bench at the end of a set. Every time I finished a set, I felt a definite sharp twinge (that may be an understatement there) in my lumbar spine and I would suffer varying degrees of discomfort in the following days.

I stared at the chest press machine and decided I was going to have to give that a try.

The action of getting off the machine is not subjecting my back to any undue stress.

It works. No aggravation of my back as I step out of the seat. No, I’m not happy about giving up my free weights, but I’d rather adapt my exercises than not do them at all.

Much easier than getting off the bench!

In February I will under go Radiofrequency Facet Joint Denervation which will hopefully help: in the meantime I have adapted. If the RFJD works, then I’ll have time to work on building the muscles supporting the spine in readiness for when the RFJD wears off.

Loading the Leg Press

Those weights for the leg press have two handles – use them! I realised lifting and carrying a 20 kilogram weight one-handed was not something I should do any more. By the time I’d loaded six of these onto the machine, plus the top-up weights, I was feeling it. Then there is putting the weights away at the end. You DO put the weights away, don’t you? Yes, I knew you did! Using two hands feels a bit awkward at first, but better to use two hands than stop doing the leg press altogether. 

Some readers may have no difficulty with a mere 20 kilograms, I realise that. Some of us more mature souls, or those starting back slowly may be very wise to take things gently initially! Pace up!

Leg Curl

Prone (face down) leg curl is another exercise my back doesn’t like. Luckily my gym has a seated leg curl machine. I’ve found I can do my leg curls with no issues at all in a seated position. No, it doesn’t look as tough, but I no longer care about looking tough, I care about staying limber and strong-ish.

Leg Curl

General Tips

Remember to PACE! While you might be an old hand in the gym, are you new to the concept of pacing for medical reasons?

Make sure you adjust the seat heights (or anything else that needs adjusting) for your particular height. While we may all have been a little cavalier about such details in the past, it pays to be picky about such details now. I usually find tall people have been on everything just before me and I have to adjust every single thing! Your body will thank you.

I don’t recommend lifting to failure, unless you are well and truly on a path to remission or lucky enough to be in remission. I do, now (“now” being until my iron vanished into thin air), lift to failure, but it is something I’ve built back up to and I certainly don’t make a habit of it – besides “failure” is a lot less now than it used to be! Russian Volume Training is probably not a great idea for us either. We’ll end up in the Boom/Bust cycle again, if not with pain, with fatigue.

Slow and steady should be our mantra for the moment. All is not lost though: I know a young man who was diagnosed with reactive arthritis. Told he would not play professional sport again, he became a hypertrophy competitor, fitness professional and was one of our teachers. He is a pretty buff guy.

I hope this may give you some ideas. If you would like assistance, contact me.

Be careful and safe!

I’m done for the day!

 

Let’s Stretch

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

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

David Tom MD, an Arizona-based chronic pain specialist, says patients who are successful in managing their conditions see movement as medicine. I love that phrase. Movement is the one of the best drugs we can use.

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

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

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

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

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

If you would like some help, Contact Limberation.

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

 

Environment

Why Do Our Bodies Attack Us?

Why our bodies attack us in the form of autoimmune (AI) diseases is still unknown. There has been much research and there are correlations, links, hypotheses……but no definitive cause has been found.

Some of the studies I have read over the years have looked at:

  • gut bacteria
  • smoking
  • stress
  • genetic predispositions
  • pollution
  • diet
  • processed foods
  • links to medications we may have been on for other conditions
  • lack of exercise
  • B lymphocytes
  • environment

Some AI diseases are local (i.e. single organ involvement), others are systemic. Co-morbidity (patient has more than one condition) is reasonably common, about 25% of patients. The rate of co-morbidity is increasing, as is the number of conditions a patient may develop.

Although it does me absolutely no good to ponder about WHY I have the conditions I do, I ponder anyway. Most patients probably do!

I can tick off several items on that list: I’ve had a reasonable amount of stress in my life, I used to smoke (quite heavily by today’s standards), I may have a genetic predisposition but am unable to confirm that, I live in a major city so am certainly exposed to pollution. Like everyone else, I am exposed to our rapidly changing environment.

“Our gene sequences aren’t changing fast enough to account for the increases,” Miller says. “Yet our environment is—we’ve got 80,000 chemicals approved for use in commerce, but we know very little about their immune effects. Our lifestyles are also different than they were a few decades ago, and we’re eating more processed food.” Should prevalence rates for heart disease and cancer continue their decline, Miller says, autoimmune diseases could become some of the costliest and most burdensome illnesses in the United States.

Source: Questions Persist: Environmental Factors in Autoimmune Disease

It isn’t just the chemicals. We are destroying our soil and our water. Both vital aspects of our food chain. Pop across to my book review earlier this year of Julian Cribb’s Surviving the 21st Century for more details. The Adani mine proposal in Queensland is most likely a health disaster waiting to happen. I look at the photo above: which environment might be healthier?

Yet many people do not develop AI diseases. Do they have a natural resistance?

Are all the different diseases really just different expressions of one disease?

So many unanswered questions.

I do think we have changed our natural world so much and so fast. We live entirely different lives than we did a hundred years ago: faster paced, less exercise, exposure to many things that didn’t exist a hundred years ago.

We also died younger: perhaps these diseases did exist, we just didn’t recognise them or live long enough for them to bother us. Yet many of these diseases do not worry about age: young or old, so many succumb to an out of control immune system irrespective of age. Consequently I’m not a fan of that theory.

It is estimated a hundred years ago humans got five times more exercise that they do today, just from living their lives. Office jobs were a rarity, not the norm. Movement was a natural part of life, not something we were encouraged to do for thirty minutes a day.

“Sitting is the new smoking” has been a mantra for a while, but now studies show standing is not the solution either. Movement is the key to good health, but we have developed a civilisation in which movement is not happening enough. We sit or stand without movement in so many jobs.

Sleep is another lifestyle concern. Most of us don’t get nearly enough. We watch too much TV, have the iPad or our phone on our bedside table so go to sleep way after sundown, yet get up at 5:30am to get that 30 minutes of mandated movement in the gym before 8 hours sitting (or standing). Rinse and repeat.

For those of us already managing AI conditions, (the pain, the financial impost, the lifestyle restrictions) finding the cause may be too late for us personally. For those coming after us, I do hope science finds a solution. Soon.

I do recommend counteracting as much as we possibly can. Eat healthily, sleep well, MOVE, avoid processed foods, give up smoking, minimise stress. Science has given us ways to manage many of these conditions reasonably well, however we can help. There is no point in my taking my prescribed medications every morning if I undermine the efficacy by my lifestyle choices.

While the scientific jury is still out, I’m looking at AI diseases as having a multi-factorial cause. I don’t believe I can rid myself of my conditions, but I can sure as hell give my body the best help I can.

Resources:

Multiple autoimmune syndrome

Autoimmune diseases (a good intro from the Australian Society of Immunology and Allergy)

Recent insights in the epidemiology of autoimmune diseases: Improved prevalence estimates and understanding of clustering of diseases

 

 

Hyperactive Thyroid Won’t Behave

I have rearranged this page to place the latest updates at the top.

November 13, 2017

The last few weeks have been a whirlwind.

  • Oct 26: completed my Pain Management Program
  • Oct 30: had double dip endoscopies and a second iron infusion
  • Nov 3: flew to Perth to visit my cancer patient friend (4 hour flight)
  • Nov 5: stopped my thyroid medication
  • Nov 7: back to Melbourne (4 hour flight)
  • Nov 8: dinner with brother visiting from NZ, organised by my wonderful daughter
  • Nov 11: another thyroid function test
  • Nov 13: nuclear scan of thyroid in prep for radioactive iodine (RAI) treatment on Friday.

Tomorrow I have a post-procedure appointment re the endoscopies and on Friday I have my radioactive iodine (RAI) treatment. But that is not all! Reading all that back to myself, I wonder how I am still standing!

The bouts of nausea have been increasing in frequency. I am tentatively blaming this on the whole thyroid treatment changes (stopping meds in prep for scan, thyroid slightly but not dramatically whacky, etc) but really, the jury is still out. I did learn today blood test results can lag behind a little, so the patient can feel a greater degree of “unwellness” than is reflected in the blood tests initially.

I had to leave work at 1:30 pm on Friday, much to my disgust. Yes, I am worried about the next few weeks, but although I could take medication while waiting for the RAI to work, the meds could inhibit the uptake of the RAI – not something I want, really.

My BIG shock for the day was this. Initially, three years ago, my hyperactive thyroid was diagnosed as a multi-nodular goitre with no cold nodules. Today I am diagnosed with Grave’s Disease with one cold nodule that will need a biopsy – before Friday. I want to stress this DOES NOT mean I was misdiagnosed: depending on what is going on with the thyroid at any given time, one condition can mask the other condition. Plus I’ve been on treatment for three years. I’m a layperson, I don’t understand the finer technical points of reading the scans (although I will certainly quiz the radiologist when I see him, just out of curiosity), but I mention it to show these things aren’t always a static situation. Treatment of both is essentially the same, apart from that cold nodule needing a biopsy.

Hyperactive thyroid could explain my arm and quad weakness that I was blaming on my low iron levels. Is it any wonder today I am finding my usual sense of humour around all this medical stuff in short supply?

I have just dashed around to my GP to get the forms ordering a “USS guided FNA” – in layman’s terms an ultrasound guided fine needle aspiration biopsy. I’m hoping I can sneak in to Radiology at lunch time – I’m assured it is a very fine needle!

One person I find absolutely invaluable in all of this is my stellar general practitioner, Dr Rebecca Watt of the Airlie Women’s Clinic. I cannot speak highly enough of her care.  For a patient, battling multiple conditions is very different to simply getting the odd work certificate for a virus. Dr Watt’s approach has been such a comfort to me, I highly recommend her and the practice.

My plan is still, at this point, to be back to normal operations by December 1.

Stay tuned.

October 26, 2017

Had a blood test yesterday to check my iron levels after my iron infusion and before I have my endoscopies on Monday (and by the sounds of it, probably another iron infusion). My iron is still too low.

I have read (on nps.org.au) that this is not completely unknown in patients with inflammatory conditions, which includes little ‘ol me. Even so, the “elimination of other causes” process will continue.

I look forward to a thrilling weekend of endoscopy preparation. As I won’t be able to do much, readers may be subjected to more of my writing!

October 19, 2017

More news. Now adding a Radiofrequency Facet Joint Denervation to my list of upcoming interventions. The professional assessment of my lumbar spine MRI is the pain in my glutes is likely to be the result of the unhealthy looking facet joints. Not a permanent solution, but should last twelve months, if I’m lucky up to two years. Can be done more than once, if it works. Scheduled for February. Can’t say I know a lot about it at this point, I only found out on Tuesday this week.

This will not prevent my return to normal operations scheduled for then end of November.

October 12, 2017

Did my first post-infusion strength workout on Tuesday. Was very happy with the results. Definitely have more energy and strength. Did discover getting up off the bench after a bench press is not something my herniated disc likes too much, so after discussions with my physiotherapist (to confirm my suspicions), I have decided my chest press will have to be in the weight machine from now on, at least for a while. I much prefer free weights, but my back is telling me to change, so change I will.

Other than that, the waiting continues for the next step. Slowly creeping towards the end of November, but I am impatient!

October 5, 2017

The infusion went well (Monday) and I am feeling more energetic already (Thursday). Will be resistance training on Saturday and swimming on Sunday. Clocked up over 8,500 steps today without an issue.

Feeling positive!

October 1, 2017

socialising is important

At the risk of over-sharing, to explain my reduced availability for a few weeks here is a short account of medical complications I am currently dealing with. This also demonstrates that even us “poster girl” patients can’t control everything!

The first complication is my hyperactive thyroid doesn’t want to behave nicely. My current medication is no longer appropriate, due to the risks associated with being on the dose my thyroid seems to crave for long periods of time. So radioactive iodine it is, requiring me to stay away from people for ten days after I take the radioactive dose. I also have to be off my current medication for some days prior: as a result I expect to be a little off colour for a week or two as my thyroid will effectively be running riot.

The second complication, which may or may not be related to the first, is my iron levels have taken a dive. A rather deep dive. I was wondering why I wasn’t getting my usual improvements with my strength training and was feeling tired at the 800 metre mark of my swims: now I know. Investigations are underway to determine if my iron is vanishing into thin air and if so, why. Procedures are scheduled for the end of this month. Iron infusion to tide me over is happening tomorrow! Very excited about that!

As you can see, my autoimmune arthritis is the least of my issues at the moment. One condition can be challenging enough: with co-morbidity, the chances are higher that clear sailing can be disturbed at any time, completely unexpectedly.

I’m still working, but reducing my availability until after these little glitches are resolved. I expect to be back to normal by the end of November. I will update this article periodically during October and November to advise of any changes. If my responses to enquiries during this time are not prompt, those are the reasons.

Wish me luck!

October 5, 2017

The infusion went well (Monday) and I am feeling more energetic already (Thursday). Will be resistance training on Saturday and swimming on Sunday. Clocked up over 8,500 steps today without an issue.

Feeling positive!