Society and Chronic Health Conditions

Society generally doesn’t cope well with the concept of chronic conditions or chronic illness, especially invisible conditions. All understand terminal illness and curable illness. The vast, and increasing, number of unwell people diagnosed with an invisible condition that is neither terminal NOR curable? Not so much understanding, not even by some members of the medical and scientific communities.

The World Health Organisation (WHO) talks about noncommunicable diseases and usually focuses on cardiovascular diseases, cancer, chronic respiratory diseases and diabetes. The WHO says the majority of deaths from these conditions occur in low- and middle-income countries.

Conversely, if we look at autoimmune diseases, also noncommunicable, we find the incidence is rising dramatically in countries like the UK, USA and Denmark.

Four million people in the UK are living with an autoimmune condition – which can cause pain, difficulty, lost opportunities in work and in life, and in many cases place people at risk of early death. Four million people. That’s almost one in every 16 of us.

Source: https://www.immunology.org/sites/default/files/connect-immune-research-are-you-autoimmune-report.pdf

Then there are those of us with auto-inflammatory conditions with genetic links and immune system process all combined.

Many noncommunicable diseases are progressive – in other words, the patient may become disabled over time. HOWEVER progression can, in many cases, be slowed dramatically by good management: modern medications, responsible eating, EXERCISE.

Yet society is not good at understanding these concepts. Firstly, people struggle with the concept that chronic patients are not curable. There seems to be this basic premise that if you are not terminal, then you must be able to be cured. Society is far better at understanding visible conditions, such as paraplegia. Even when I was using a walking stick for a brief period, I got “better” acceptance on planes, trains and automobiles. That’s visible. This may well come from earlier times when it was quite likely people with chronic conditions did in fact die due to factors related to their conditions. For example, if any of the arthritic conditions progressed to the stage you could not hunt and gather to feed yourself, you may have starved. Asthma can be well controlled with today’s medical knowledge and treatments, but 1,000 years ago? Psychologically, humans cope with the two categories of terminal and curable – those two states have been around as long as we have. Chronic patients, those who are technically sick but live an almost normal life and almost normal life span, is a relatively new health state.

I do not personally like the terms chronic illness and chronically ill. I am not ill in the sense I am not able to live a relatively normal life. I’m not confined to bed, I’m not in hospital, I’m not on a drip: I’m still driving, swimming, working. I have chronic conditions I must MANAGE, I can never stop managing those conditions, but I am not ILL in the sense of the common usage of the word. I stress the difference between common use and medical use of the word ill. I’d like to see a different description we can use. Which sounds worse to the non-medical person: “I have a chronic condition” or “I am chronically ill”? Ill implies, rightly or wrongly, that I’m unable to function in a normal way (with some specific adjustments, perhaps). “I have a chronic condition” sounds much less scary (even to me). Society generally doesn’t refer to a paraplegic as chronically ill because many are not “ill” – does anyone think of Dylan Alcott as “ill” even though, medically, he is. We think of him as a paralympian. His achievements speak for themselves.

This is not to say that as chronic conditions progress over time the patient may not become very ill. They can. Marieke Vervoort, another paralympian, recently ended her life in Belgium when her incurable, degenerative spinal disease reached the point it was too hard for her body. It is wonderful that Vervoort had this option available to her when needed. 

“I’m really scared, but those (euthanasia) papers give me a lot of peace of mind because I know when it’s enough for me, I have those papers,” she said.

I’m focusing on those of us who have been diagnosed but are still able to function and may do so for many years PROVIDED we manage our conditions. Now, this is where there seems to be a disconnect between society and the understanding of chronic conditions. If I tell a well, non-medical person that I need to balance (pace) my exercise regime and my rest times this seems to be hard for many to grasp. You are sick enough to need rest but you go to the gym and you swim? This makes no sense. Well, it DOES make sense, that is what some of us must do to manage our conditions. Different conditions, different management plans.

Society includes governments. Governments are made up of people – who also do not necessarily get the managing the condition concept. The costs of managing chronic conditions, costs that are not strictly medication, can be high for individuals. Yet there is little support for those costs. If we don’t manage our conditions the costs to society become higher because patients may lose the ability to work: there are ongoing social costs that come with that.

It affects our employability. Employers, perfectly normal members of society, can struggle to consider a person with a chronic condition. They see it as a risk. Yet in many cases we are a more predictable health risk than a perfectly healthy person who may start work today and have a car accident tomorrow or be diagnosed with a more severe illness a month later. Most of us know what we need to do to manage our conditions. We MAY need some flexibility: part-time work to allow for exercise, medical appointments, rest. Or perhaps a later start time (arthritic conditions are notoriously inflexible in the mornings).

As a society we do accept some invisible chronic conditions very well, such as asthma and type 1 diabetes. Why the difference? Perhaps because these conditions are relatively unobtrusive to the people around you. Most would not know a person had these conditions unless the fact is disclosed. As a society we also understand these conditions are now (in most cases) well controlled by medications. The prevalence is also a factor: most of us know a diabetic or an asthma patient. Hayfever is another condition we all just accept as being a “normal” condition people have – we don’t ostracise hayfever sufferers.

It is the more systemic and/or less prevalent (rarer) chronic conditions that seem to be less well accepted and less well understood. With the annual increase in prevalence, we need to develop greater understanding and acceptance. Society also needs to consider better support mechanisms. Every person with a chronic condition or conditions will likely have a task that is beyond their physical capabilities, yet they can otherwise live a normal life. As a society we need to address chronic condition support to assist patients to stay as well as possible for as long as possible. Keep people independent, gainfully employed, contributing to society. This maintains the patient’s mental health. To do otherwise is false economy.

How we make this shift is a challenge society has not yet recognised, let alone is considering solutions for. Yet with the annual increase in prevalence, action is needed.

How do we drive change? Society has made huge accessibility improvements for people with mobility aids: society can do this too.

Engaging the Correct Muscles

You did it! You went to a physiotherapist or exercise physiologist (EP) or personal trainer (PT) and you now have a resistance training programme! Congratulations, you have taken another step in managing your chronic condition.

Even though I am qualified, I still seek the assistance of other professionals when I deem it appropriate. I did recently, with my osteoarthritic knee.

One of the exercises I have to do currently is the TRX supported squats shown in the above photo. As I was doing them alone I realised, “Hang on a minute, I’m using my arms to pull myself up!” This, of course is not the idea at all with squats – the target muscles to work are the lower body! Yes, in this case I am using the TRX to support, but I still need those lower body muscles to do at least some of the work!

While we are under the watchful eye of our physio, EP or PT they are watching closely and monitor that we are engaging the correct muscles. Technique isn’t just about holding correct form (e.g. a straight back), it is also about using the right muscles.

Once we are on our own, not being monitored, we have to ensure we are feeling the right muscles working. Sometimes that is harder than others. During a leg extension exercise it is a little harder to cheat, but those TRX squats? Quite easy to cheat. Especially for those of us with chronic conditions trying to rebuild our physical strength and resilience.

When you are in the gym by yourself working your program, check the pictures on the item of equipment (if you are using equipment), there should be some like this.

Concentrate on feeling those muscles working.

Where there is no pictorial reminders or guidance, there is usually a gym instructor on duty who won’t mind checking your technique for a moment or two if you ask.

During your physio, EP or PT consultation, make sure you are clear on exactly which muscles you should be engaging when doing each exercise and make sure you concentrate on feeling them working when you are on your own.

We want our time spent exercising to have therapeutic value, after all!

Bonus Reading for Psoriatic Arthritis patients:

A resistance exercise program improves functional capacity of patients with psoriatic arthritis: a randomized controlled trial

Ditch Your Handbag!

Even for well people, this situation is not good. For many people with a chronic condition (perhaps a musculoskeletal condition), it is even worse. It is vital we pay attention to our posture and our body balance. By body balance I don’t mean standing on one foot (although that IS a very good exercise) I mean ensuring our muscle strength and length on each side of our body is balanced, that our chest and upper back muscles are balanced. For every push exercise, we balance with a pull exercise. Rock hard quads are great, but don’t ignore the hamstrings!

What has that to do with handbags? Look at the photo. If I walk around too often like the middle image, what do you think might, over time, happen to my shoulders? The muscles on one side will be over worked and I may develop a postural abnormality. This can lead to pain and most of us do not want that.

If you rarely use a handbag, fantastic. However if you are travelling to and from work on public transport five days a week, then walking around town (getting incidental exercise) at lunch time, the hours add up.

Even if you do not yet have a condition to manage, this handbag on one shoulder habit is still not a good thing. Slinging a backpack on one shoulder is exactly the same effect. Not a good thing. Because we are creatures of habit, we do tend to use the same shoulder each time. If we swapped it around evenly, it might not be so bad.

You may keep a pretty handbag for social events. Or a businesslike one for job interviews. Other than that, ditch the handbag and invest in a backpack. Or several. There are a wide variety around these days and many look remarkably like handbags or can be disguised as one quickly if necessary.

There are even ones that can be brought around to the front for access without taking them off – very nifty.

If you do not have the shoulder mobility to use a backpack and you carry a handbag, remember to share the load between arms.

Short and sweet, just my tip of the day!

 

Incommunicado Quads and Walking Sticks

I know I’ve been incommunicado – unfortunately the quads in my right leg also went silent – so silent I couldn’t move my right leg. At 1 am on a Friday morning, not knowing what was wrong, I’ll admit to being a little panicked.

This was a few days after I’d had some very minor, completely unrelated surgery, so it was a bit of a busy time. My knee was already playing up then, as the hospital had helped me into a wheelchair from the taxi on arrival for admission.

Initially I thought I’d just been lying funny and my leg had “gone to sleep” and would recover in a few minutes. When it didn’t, I was a little more concerned. I couldn’t actually make it out of the bedroom – every time I tried, using the windowsill as a walking stick, then swapping to the bed frame – I’d get halfway across the end of the bed and feel SO nauseous I’d have to lie down again. Took me three or four attempts to actually get out of the bedroom. The doctor later told me this would have been due to pain, yet I do not recall any pain, I just could not use my leg. Well, yes, it was very painful if I put any weight on it, but I was studiously avoiding doing that – or so I thought!

To cut a very long story short, I dragged my poor daughter out of her bed, a 40 minute drive away, to take me to the emergency department. By 10 am I could lift my leg about 1.5 centimetres off the bed in ED. By noon I could bend it 90 degrees! Yay! I did not want to be admitted because the following week I was starting a clinical drug trial and intervention at this point might very well have excluded me. More on the drug trial in my next article – it is FANTASTIC.

So I was allowed home with a prescription of rest and elevation. The knee was rather swollen. Something else I didn’t need. It was the swelling in the knee that cut off my ability to use my quads. I should have known: earlier in the week I’d used an ice pack. I remember thinking “This ice pack isn’t very cold” then popping in on my left knee for a moment and thinking “This ice pack is FREEZING”. Clearly there was already a bigger problem brewing than just a sore knee.

My quads shutting down had nothing to do with my psoriatic arthritis. This was just a new problem arriving with very bad timing.

An MRI later and the results were in: “significant osteoarthritis, particularly behind the patella”. Oh, great – just what I need – not.

I got one of those awfully boring grey hospital sets of crutches so I could get around. Of course I thought I’d only need them for a day or two. Umm nah. I did manage to get down to one crutch, but I hated the grey, the cuff didn’t fit properly over my denim jacket and I was about to go to a conference in Sydney (more on that in a later article too). So I bought a very pretty walking stick (see above). If I had to use one, I was going to at least be semi-stylish!

Second problem was how to rehabilitate this knee. My rheumatologist advised (just as well, really) exercise to build my muscle strength back up. With the challenges I’ve had since January with medication changes and the resultant psoriatic arthritis flare, my exercise had taken a temporary back seat. It doesn’t take long to lose strength, especially as we age! I am reasonably sure this contributed to the osteoarthritis letting me know it was not at all happy with me. In order to make 110% sure I was doing the right thing, I enlisted the help of an exercise physiologist, Jack. Yes, I’m a personal trainer, but in this specific case I wanted to triple check my approach was correct. Jack has higher qualifications than I do and I do not hesitate to call in the big(ger) guns if necessary. He did get me to start a little slower than I might otherwise have done (a good thing), but by the second appointment he essentially let me loose. I did pick up some nice new very specific rehab exercises from him and am very grateful for his guidance and expertise.

I retired my walking stick on August 29th after six weeks. Yesterday I was back on the leg press, high reps, low weights. VERY low weights. I did one set at 40 kgs and two sets at 60 kgs. I was doing 160 kgs last year! This picture won’t mean much to readers, but to me it was getting my mobility back!

I’ve also been doing hydrotherapy. I’m “allowed” to do as much hydrotherapy as I like. Jack was thrilled I was doing squats in the hydrotherapy pool, I was thrilled he was thrilled with my adaptation! I do them out of the pool as well, but in the pool is good, especially with this darn knee.

Back in 2014 I’d had a Synvisc shot in my left knee (which was great) but of course that strongly indicates that left knee is not all that wonderful. It also indicates (although I didn’t have an MRI of the right knee back then) that perhaps both knees were a little under the weather back then. I had an arthroscopy on this right knee many years ago and until now had no further issues. Well, now I know I have two knees requiring a little extra care and attention. With the extra load the left took while my right was on strike, by the time I retired the walking stick, my left knee was reminding me it is no longer a perfect 20 year-old knee. I threw my hands in the air and applied the rehab exercises to both knees.

I’m lucky – I have been able to retire the walking stick. Using one is like driving, it takes a long time before it becomes second nature. I felt I was on “L” plates the whole time. I’d drop it when trying to juggle bag, stick and anything else I happened to have – such as a morning coffee. Getting on and off trams was a challenge but at least I was no longer one of the invisibly ill and people jumped up to give me the special needs seats. I now had a badge. I never seemed to be able to lean it anywhere without it falling over – poor Cleo (my cat) nearly got whacked by the flying walking stick several times as it fell to the floor. I felt I just could not get it right. I also felt SO SLOW.

I have a new appreciation and understanding of those who use mobility aids permanently or semi-permanently. In the last week, I carried it with me, but used it less and less as my knee recovered – however then people look at you in very odd ways as you are carrying but not actually using a walking stick. I never thought of getting a folding walking stick – lesson learnt!

That particular situation is much better addressed by Kristen Waldbieser, who does not need her wheelchair 100% of the time.

Between minor surgery and the above, I hope you forgive me for being very quiet. I’m going to make up for that in the coming days. I have a drug trial and a conference to write about! Stay tuned!

When Medication Messes With Your Mind

Warning: This article discusses mental health issues (medication side effect).

If you are feeling depressed, down or anxious the following support lines are available in Australia.

WHERE have I been? I had an unpleasant reaction to a medication prescribed to treat my autoimmune arthritis. It has taken me a while to feel in a position to write ANYTHING (other than a 280 character Tweet).

My usual policy is not to name medications in my articles, simply because everyone’s experiences are very different with these medications. I don’t want anyone to think negatively of a medication because of my specific experience. However, in my last article I did name the medication I had recently started, methotrexate.

I had an unexpected reaction: both my dermatologist and gastroenterologist prescribe it for conditions in their specific areas of expertise and have never had any of their patients experience a similar reaction. I did locate a study reported on Science Direct that looked at three DMARDS and mental health in rheumatoid arthritis patients: “Anxiety, depression and suicidal ideation in patients with rheumatoid arthritis in use of methotrexate, hydroxychloroquine, leflunomide and biological drugs“. Perhaps there are condition factors at play, but as a patient going through the awfulness, that is really, at the time, irrelevant.

There is no doubt (and plenty of supporting documentation out there) that chronic illnesses can lead to, or indeed have, depression as a co-morbidity.  I’m also well aware and have written before about the importance of maintaining our mental health, so I always ensure I am taking the recommended actions to minimise the risk for myself. This was different.

I thought the first couple of weeks were OK – not fantastic, but OK. I went downhill after that. I won’t cover the full timeline in detail, suffice to say it progressively worsened. In the earlier weeks, there were days when I would feel the cloud lift, could almost set my watch by it, which made me think my body was simply adjusting to the new medication and all would be fine. I took the fifth tablet on the Friday as scheduled (weekly tablet). By the following Monday (three days later) I was leaning against the bathroom hand basin feeling completely unable to shower, do my hair, clean my teeth. Going to work just seemed beyond the realms of possibility. I’d already had time off, waiting for this medication to kick in, I didn’t want to take more time off. I didn’t want to crawl back into bed and hide under the doona, I wanted to crawl under the bed and stay there. It was awful. I had also been crying at the drop of a hat building up to this crescendo.

I dragged myself to work that day, I’m not sure how. The first stop I made was to my wonderful pharmacist. I explained how I felt and asked could this be the medication. Call your prescribing doctor was his immediate answer. So I did. Got an appointment for the Friday of that week. This simple action did make me feel slightly better, I’d done something, I’d taken action.

By this point it was as if there were two people in my head. One, the logical, practical, ex-science student, educated systems professional saying “this is a side effect, hang in there, there is help available”. One of my other doctors, in just general discussion, has suggested that was quite likely part of my problem – I was too logical about it and should have pulled the plug earlier! He thought he’d possibly be the same in a similar situation, which made me feel better about my stubborn perseverance! The second person in my head was the emotional or psychological me just wanting to crawl up into a ball and hide from the world. At times it was like the two were at war.

Did I feel “at risk” at any stage? I don’t believe so, but the logical me kicks in again now when answering that question and says “Can you be really sure? Your mind was not yours at the time.” The best I can say is while I felt, at the worst of it, that I was drowning in some sort of deep, dark, oxygen-depleting substance, at some level I still wanted to rescue myself, to get out of the quagmire.

My prescribing specialist took me off the medication immediately, prescribed another DMARD (this is my fourth since early 2015) and told me to do a two week wash out of methotrexate before starting the new medication. He said if I didn’t feel better in two weeks to see someone (i.e. a mental health professional). I actually did a three week wash out because I had an unrelated day procedure looming in another specialty and he asked me to wait an extra week. Oh, the juggling of it all.

By the end of the following week, (two weeks having transpired since last tablet taken) I was feeling perfectly normal psychologically. Or should I say, normal for me.

Another of my specialists asked why I had been taken off the medication. My response was this.

There is a difference between wanting to die and not wanting to live, but it is a very fine line.” The former requires taking an action, the latter does not. I had at times felt the latter.

In my particular case not being able to exercise, due to the swollen foot and very grumpy shoulder, added to my “downer”. The two physical flares together made both gym and swimming activity inadvisable. I felt defeated. Exercise is not only my primary pain management tool, it is also a great mood lifter. Other clinical benefits are helping control weight and strengthening muscles, thereby protecting and supporting joints. Without exercise I felt I was losing on all fronts. I felt I was not in control of anything.

Mentally/psychologically I’m now fine, but I will never persevere as long again if I have another similar reaction to a future medication. I am aware this is the second time medication has messed with my mind, the first time being when I lost my sense of direction completely. At the time, I didn’t link that symptom to the medication I was on: I thought perhaps it was age related or similar. I’d even asked my then GP was there a test for early-onset Alzheimers as it was so debilitating and I was concerned maybe I shouldn’t be driving.

I remember being in my daughter’s car as she drove me to an appointment, fully functional GPS, very good driver (I taught her, so OF COURSE she is good). I was CONVINCED we were driving in the wrong direction. One week after stopping that particular medication (for other reasons), my sense of direction miraculously reappeared and I’ve had no problem since. No, correlation does not mean causation, but in this case, given I’d never had the problem before and haven’t had it since, I’m leaning towards it being a side effect. With two incidents now, may this indicate I have a predisposition, genetic or otherwise, for these medications to mess with my mind? I have no answer, but I’ll be super cautious from now on.

How am I, right now, physically? It is going to take up to eight weeks for the new DMARD to fully kick in; I’m in my second week. In the meantime I’m supplementing with prednisolone and the occasional Celebrex. I’ve started SLOWLY tapering off the prednisolone, but it will take time. I’m back swimming and gyming, more gently/lower intensity than previously at this point, but I’ll build back up. High reps, low weights for the moment. If I have to nominate a problem body part, it is feet and ankles which have never been a problem for me in the past. New challenges!

We are constantly learning on this chronic illness journey. For each one of us the lessons are different. This has been a difficult couple of months for me, without a doubt. My heart goes out to those people who suffer clinical depression, as I suspect what I experienced, albeit for a relatively short period, may be similar. I am so very grateful my solution was simply to remove a medication and thereby quickly regain my mental health.

On a good note, methotrexate was fantastic for my skin – the primary reason for the medication change! The UV B light therapy had worked wonders, but progress seemed to have stalled before the point of final perfection was reached. There was a small rough patch on my chest I was using as a progress gauge which had stopped reducing in circumference – a couple of weeks on methotrexate and that patch had completely resolved.

I cannot sufficiently thank my medical team, especially my GPs who again went above and beyond, providing additional support at very short notice. My daughter took a tearful phone call from me while she was still at work and spent a Sunday with me for which I was extremely grateful. I should also thank my Twitter friends for putting up with me – they didn’t know what was happening, but in some ways Twitter was a bit of a lifeline – it helped take me out of the darkness, with non-medical topics to try to focus on. I was on there WAY TOO MUCH!

I have deliberately written this article in “patient voice”. Not just for fellow-patients but for any health professionals that may wander past. None of us are alone. I realise I am taking a personal risk in publishing this: we are generally not a society that deals with chronic illness terribly well. We do much better with acute illness, where people get better. I still work in the “real world”, so publicly disclosing vulnerability can carry a price. Yet if we continue to hide ourselves away, to be silent about the challenges we face, we will not encourage change. I’m taking that risk.

If you notice a detrimental change in yourself that just doesn’t seem right, don’t try to soldier on without consulting your health professionals. It isn’t always new medications either, sometimes problems can arise after considerable time, for example two years. A special word of warning to those of us who live alone. We don’t always recognise what is happening to ourselves, especially if the change creeps up on us. We don’t have others to give us feedback. Looking back now, this was a little insidious. The accelerator really pushed down in that last week. We have to be extra vigilant, I think.

Time will of course be the judge, but hopefully I’m back on an upward path. All this because I wanted my skin back!

Footnote: This article is the third in a series detailing my medication change experiences. The first two articles are:

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

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

NEVER CHANGE YOUR MEDICATIONS WITHOUT YOUR DOCTOR’S APPROVAL.

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

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

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

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

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

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

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

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

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

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

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

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

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

We shall see – wish me luck!

Magpie

Exercising in Summer When You Are Heat Sensitive

Many of us with chronic conditions are in the unfortunate situation of needing exercise yet at the same time, we are heat sensitive (sensitive is an understatement in my view, but it is what it is). Exercise makes us hot – or at least warmer than normal, depending on the intensity of our routines. How can we get through summer and keep up our exercise regime? We need to keep pain and stiffness away!

For those of us not native to Australian heat, it may be even more challenging. Well before I got sick, way back in 1974, I arrived in Melbourne on a February day. 38 degrees Celsius. Up until that point in my life, 23 degrees was a warm day! I thought I’d landed in Hades! I had a girlfriend living in Adelaide at the time whom I visited. If my memory serves, over there it was 43 degrees. I remember lying on her kitchen tiles to try to keep cool.

Earlier today I saw the magpie above, pictured here keeping cool under the protection of the leaves, with beak open and wings lifted from his body to maximise heat loss. I missed that image, but was pleased to see him looking cooler.

Over the years I had somewhat acclimatised, until I got sick. For many of us, heat intolerance/sensitivity is entirely new, so how best to cope?

Ensure Your Gym is Properly Cooled

This gives you some flexibility with staying active. Today, I will be walking inside, not outside. Treadmills are not my preference, I much prefer walking outside, but I found even walking at 6 pm last night uncomfortable and we are nowhere near summer yet.

Allow yourself to cool down before you venture outside.

Swim

If you can, swimming is a great exercise and the environment is cool. Getting to and from the pool may not be so cool, but with good air con in the car and a close car park most of us should manage.

If you have never learnt to swim, think about lessons. In addition to the physical benefits, swimming has been shown to have mental health benefits, so important to those of us managing chronic illness.

You may need to invest in a rashie for adequate UV protection depending on the time of day you prefer to swim.

Hydrate!

I wrote Hydration Habits – Are You Drinking Enough? recently, so I refer you to that article for the detail. Make sure you hydrate before, during and after exercise.

Cool Your Skin During Exercise

I have lesions on my left arm, the result of medication-related photosensitivity, which become bright red when I exercise. I run my arm under cold water between sets. A wet towel on your face, chest or back can help. Some gyms have large fans facing the cardio equipment – turn them on.

Change Your Routine

In Victoria we are into daylight savings time. Use it to your advantage. The UV danger window has shifted an hour and the evenings are lighter. Check the UV ratings every day, work around it. If walking outside, walk later when it is cooler, or earlier if you are an early riser. Early is not an option for many with chronic conditions as our energy levels seem quite depleted most mornings.

Hydrotherapy Pool

If you have access to a hydrotherapy pool, this can be an alternative to strength workouts in the gym. I find the water temperature a little warm for me personally, but I still do exercises in it. A quick dip in the normal pool to cool off before the trip home is a sensible move, or a cool shower.

Wear Light, Loose Clothing

I’m a minimal clothing person in summer, I always have been. The concept of long-sleeve shirts, rashies in the pool, sunnies and hats was never my style. Now I own long-sleeved shirts of 50+ protection fabric. Of course, while this helps my photosensitivity, it doesn’t help my heat sensitivity as much! Learn to juggle the clothing style, time of exercise and type of exercise that best suits your personality. Why is your personality important? Because we are all more likely to do something we are enjoying. If we HAVE to wear a hat and we hate hats, we will be less likely to go for that walk. Better to change the time so we don’t need the hat.

Summary

It is getting warmer now, so now is the time to experiment and plan for the warmer times coming. Know what you will do on really hot days, so when they arrive you are prepared. Know what temperature is your definite “Don’t leave the house” temperature. What will you do those days, to keep yourself moving? Double your stretches, maybe. Use thera-bands. Do body-weight squats and push-ups at home. Leg lifts with ankle weights. There are options. These ankle weights of mine have 4 x 575 gram removable weights, so super adjustable for home use.

 

If you are in a pacing UP phase, the UP may need to be put on hold on really hot days – it just may not be sensible to have that level of exertion. That’s OK, just keep moving.

When all else fails – get a manicure! At least the salon will be cool.

Manicure

 

Tiger Pacing

Pacing THRU, Pacing UP, Pacing DOWN

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

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

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

Pacing THRU

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

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

White Daisy

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

Pacing UP

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

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

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

Pacing DOWN

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

de-conditioning

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

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

Dandelion

Pacing THRU and UP

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

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

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

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

SMART Goal Setting

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

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

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

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

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

Further Reading:

4 Resilient Ways to Cope With Chronic Pain – Huffington Post

Doctors and Exercise – Limberation.com

posture

Is Your Posture Exacerbating Your Pain?

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

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

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

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

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

How are you standing?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Images used under license from Shutterstock.com

chronic conditions care courage consistency coaching

Care, Consistency, Courage and Coaching

Chronic Conditions

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

Care

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

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

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

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

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

breakfast
Breakfast

Consistency

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

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

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

de-conditioning

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

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

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

consistent exercise
Consistent daily steps

Even if you have to dance to get there!

Courage

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

leg press

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

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

Now a gym session looks like this:

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

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

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

Coaching

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

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

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

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

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

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

Contact me for a confidential chat as a starting point.

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