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! 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.

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!

 

 

 

Pacing For Beginners

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

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

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

Warning: Maths Ahead

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

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

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

Putting Pacing into Practice

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

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

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

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

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

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

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

The Rules

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

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

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

Other Thoughts

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

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

Challenges of Living Alone with Chronic Conditions

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

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

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

Grocery Shopping

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

Shop more frequently if possible and necessary.

Showering

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

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

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

Changing the Bed Linen

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

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

Our Hair

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

Dishes and Ironing

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

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

Cooking

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

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

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

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

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

General Housework

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

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

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

Summary

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

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

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

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

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

Bailey's Latte
This was SO delicious.

Three years ago I was on crutches.

recurring appointments

Yes, Brain Fog IS a Thing

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

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

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

Check With Your Doctor

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

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

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

Write Everything Down

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

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

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

Look at Your Calendar

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

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

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

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

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

Medications Too!

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

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

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

Don’t Feel Guilty

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

Shopping Lists

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

Variations on the Theme

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

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

Sleep, Exercise and Nutrition

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

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

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

Science is Not Static

Fifty years ago my mother (above, photo 1949) was admitted to hospital for exploratory surgery. To see if she had cancer. Today a very dear friend of mine is bravely fighting cancer: he is in week two of chemotherapy and radiotherapy. A scalpel hasn’t been near him yet. There will be surgery, but the diagnosis hasn’t required surgery. We have ways to look inside the body that we didn’t have in my mother’s time.

It Began With Sudden Blackouts. Then Came Some Alarming News is about a woman’s survival today that would not have been possible fifty years ago. G.C.M. is a rare autoimmune disease.

It was giant-cell myocarditis (G.C.M.), the most dangerous of the possibilities. This mysterious and deadly autoimmune disease has only been diagnosable before autopsy since the development of the heart biopsy some 50 years ago. Effective treatment has only recently emerged.

In Get the Stress Out of Your Life I talk about another RA patient I met at the gym. I can’t help but wonder had he been diagnosed in this era, rather than over twenty years ago, would his outcomes have been different?

Many people will remember thalidomide. Thought initially to be a great drug for treating morning sickness during pregnancy, it caused babies to be born with limb deformities.

About 40% of babies damaged by the effects of thalidomide died in their first year. But there are adults alive today who are living with disabilities caused by thalidomide.

Medical science learnt and the drug was no longer prescribed to pregnant women for morning sickness.

Medical science continues to learn. There are many articles in the media of late about opioids and addiction. Here are just two recently published; one from the USA, one Australian.

Neither article paints a positive picture. From the latter article:

…health authorities worldwide are grappling with soaring rates of opioid addiction and deadly overdoses. In Australia, the majority of opioid overdose deaths are now related to prescription painkillers rather than heroin.

Earlier in the week I became involved in a discussion on Twitter about alternative approaches to the management of chronic pain. I had just published an article, Our Pain, Our Brain and Our Nervous System. I work very hard to stay off pain killers and am very happy with my progress. In this twitter conversation I was told by an American MD there is no evidence supporting activity as a strategy. I wished my pain clinicians had been in my study so they could have taken over! As I was somewhat outnumbered and I do find 140 characters limiting, I bowed out of the conversation. I felt it didn’t matter what evidence I presented, I was not going to be heard. Two of the participants in that conversation reached out and I am communicating with them individually.

That experience got me thinking. We, both doctors and patients, are happy to use our new imaging technologies. We are grateful there is now a way to save a G.C.M. patient. We embrace biologics such as adalimumab. Why then are some so resistant to the concept there may be other ways to treat chronic pain than pain killers? UK studies have found GPs are “unconfident” discussing exercise with patients. This is perhaps related to the bigger picture.

The Pain Management Research Institute (University of Sydney) offers the ADAPT program.

When no effective or curative treatments are available the person in pain needs to shift their focus from seeking pain-relieving treatments to things they can do something about, despite ongoing pain.

These include increased activities, physical fitness, strength, mood, sleep, reducing reliance on unhelpful medication, developing useful coping strategies, improving relationships at home, getting back to suitable work, etc.

This requires that the person in pain has a good understanding of their pain and accepts the idea of living a normal life despite ongoing pain.

I can attest it doesn’t happen overnight. Yes, it takes effort. But the rewards and results are worth it.

Alternatives to pain killers are definitely worth considering. The programs do have exclusion criteria (refer the ADAPT link above) and people like myself with underlying on-going medical conditions do face additional challenges. It works for so many of us. What have you got to lose? More importantly, what can you gain?

Use of strong pain killers can result in drowsiness – no driving, perhaps unable to work, limits social interaction. One common one makes me and many other people very nauseous to the point all I can do is lie still. Not how I want to live my life. None of the pain killers cure the pain or help me live a normal life. We do less; as a result our bodies de-condition. As a result of that we most likely develop more pain. Weak muscles lead to unstable joints. I can’t build muscle strength if I am lying on the bed too nauseous to move from the use of a pain killer. I got my life back.

Resource:

Manage Your Pain (Australian Pain Management Association)