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)

Our Pain, Our Brain and Our Nervous System

Most of us felt cynical, and disliked the physio and doctors enormously. We’d talk among ourselves, ‘Oh it’s all right for them to tell us so and so, they’re not in pain.’ “Like most in the group, I’d been protecting my painful body, using the old reasoning, if it hurts, rest it. I’d bundle my arms around me and pick things up with my toes. My life had become massively restricted.” Source: Barbara’s Story The University of Sydney

That is Barbara Walker speaking about her initial introduction to a new approach to managing her chronic pain (see definition below). While Barbara was skeptical, the approach worked so well she and her family were instrumental in establishing the centre in Melbourne.

The following short video covers a lot in five minutes, please do take the time to watch it.

I was very surprised to learn 1 in 5 people worldwide suffer chronic pain. This is not a small percentage of the population. Think of all the people in your family, your workplace and your circle of friends. 100 people? I like round numbers. So it is statistically probable 20 are suffering or will suffer chronic pain.

I am writing this as a patient, just like you or someone you know. My objective today is to highlight there are evidence based approaches to living with chronic pain which you may like to consider. Referral information and other details about the Barbara Walker Centre for Pain Management are found on this St Vincent’s web page for those in Melbourne.

Because I am not qualified to speak on the topics of neuroplasticity or the finer points of nerve receptors and neurotransmitters, I’m not going to. This is actually sad, because I’d LOVE to, it is interesting and exciting stuff! It is also very specialised and the multi-disciplinary team have many years of clinical experience. Providing patients with an in-depth understanding of how pain works is a vital component of this approach to improving our quality of life. The relationship between our nervous system and our brain is very much a part of the solution. No, the pain isn’t “all in our heads” – but our brain is involved.

Ask yourself what are all the things you have tried to date? Has your quality of life improved as a result, or has there been only brief periods of respite? How often have you felt you had to choose between taking pain meds OR going to work, because invariably doing both is not an option? Is it worth trying something different, as Barbara did in 1995? As I have done and continue to do.

I feel as if I’m writing an advertorial for others, when if I should be writing one for anyone, it should be for my services! The truth is, while exercise and movement are part of the equation, there are other variables, some of the practical ones I have addressed in previous introductory articles. I would be remiss if I didn’t draw attention to the work being done and the support available in this sphere. After all, I didn’t know of pain centres until I was referred by a general practitioner.

Chronic pain is defined as pain that continues after the initial cause of the pain (injury, surgery, inflammation etc) has healed. Those of us with chronic conditions/illnesses/diseases may have ongoing causes of pain – so perhaps a mix of chronic and acute pain but the approach should still help us.

Image Credit: Designed by Freepik

Are Your Shoes Contributing to Your Pain?

I’m not just talking about six inch stilettos. Our shoes affect how we walk, how we stand and consequently our posture. If we are already facing joint issues, postural imbalances aren’t going to help. In simple terms, we can end up favouring (guarding or protecting) some aspect of our body which can place more strain on another part. It can become a case of the chicken or the egg, trying to work out where it all started.

Part of the solution may be changing your footwear. My rheumatologist gave me a stern lecture about heels. OK, his tone wasn’t stern, but I could tell his intent was! We know high heels aren’t good for us, but we keep wearing them anyway – until we get to the point that it is JUST TOO PAINFUL to persevere. We have to find more suitable footwear.

My Shoe Adjustments

About six months ago I bit the bullet and went on a “low heels” shopping spree for the office and social wear. In my down time I was living in runners, but that’s not such a good look in the office. Socially? I was warned, in no uncertain terms, by a girlfriend NOT to wear runners on a night out. Even with these lowest of low heels I was still experiencing pain in my right buttock and lumbar spine at various times, usually towards the end of the day.

I’ve found a great help for me – and for a neighbour, a friend and the friend’s husband. This may not work for you, but I’m sharing in the hope others may also benefit.

In sheer desperation one day I dragged my old MBT shoes out of the closet and wore them for two days. NO PAIN! However, they were so old (I’d forgotten I had them) that wearing them triggered end of life (theirs, not mine). Not surprising really – nothing lasts forever. I tried to buy replacements. Very, very hard to get in Australia these days.

Kyboots by Kybun

Doing my “can I buy them somewhere else” research I stumbled across KyBoots by Kybun. I discovered the brains behind the original MBTs, Karl Müller, had moved on to developing his next generation shoes. There are only four stockists in Australia: one in Melbourne, two in New South Wales (Sydney and Mona Vale) and one in Brisbane. Kyboots don’t have a very high profile in Australia – yet.

What makes them different? This is an American video, but illustrates the technology.

I visited the Melbourne stockist in early July with NO intention of buying, just seeing what they had and trying them on. Yes, I walked out with my first pair. As soon as you walk around in them you can feel yourself standing differently. A co-worker who sees me at work every day told me I was walking as if I was twenty years younger – and without dobbing that person in, they are qualified to make that assessment.

I walk around a lot in my other job so my first priority was something I could wear to work that looked professional (i.e. did not look like runners). As you can see from the video below, they are fine for an office environment.

My Contacts’ Reactions

I posted about them on my personal Facebook page and spoke to a neighbour in my apartment building. It isn’t just me. My neighbour bought two pair: one for work and one for social. Her comment to me, “I don’t even take them off when I get home, they are too comfortable”.

The Facebook contact’s experience is best shown by her posts to me (I have redacted her name to protect her privacy).

After a while this was her follow-up note to me.

She sent me a picture of her choice.

Kyboot

A Second Pair

So now I had solved my office problem, but I wanted some that I could wear working in Limberation. Something that would go with my gym gear. On the Kybun website I had spotted the very colourful style featured at the top of this article. Sadly, this style is not stocked in Australia. Yet, anyway! The Melbourne stockists, Peter Sheppard, very kindly ordered them in for me specially. I was very excited when they arrived. I was able to determine the size required by trying on another very similar shape style prior to ordering.

Pros and Cons

These are not cheap. Up to $500 a pair depending on the style. As a friend said to me, “You can’t put a price on pain reduction”. Yes, my budget has been very tight this month, but I’m set for a while now.

The heel can also look a little odd when walking. Ignore the cat hair, she was all over me when I got home! In this photo I am landing on my heel to show the “squishiness”. The runners I have bought are not as squishy.

Kyboot

You really must try them on and be correctly fitted. My two pairs are two different sizes – the runners I wear with socks are slightly bigger than the ones I wear with stockings or bare feet. Take a typical pair of your socks with you to ensure the correct fit. I was really interested in getting a pair of sandals for summer, but I have very flat feet and in an open shoe my toes don’t stay where they should, so I think I’ll have to stick to closed styles.

The benefits, if these shoes suit you, are worth every cent. Everything we do – controlling our weight, increasing our movement & exercise (re-conditioning our bodies), reducing stress in our lives – all contribute to us managing our conditions and improving our quality of life. If a shoe helps us experience less pain or be able to move for longer before we experience the change (onset of pain), then we are going to be better off. Not only will we experience less pain, but we will re-condition faster than we might otherwise have done which in turn will help us manage our pain.

Summary

Before you ask, no, I don’t get any payments or discounts for writing about the KyBoots. I’m sharing because I’ve been so amazed and so have two contacts of mine. I have worn mine every single day since I got them (nearly two months ago). One of the Peter Sheppard staff told me that is what she had done the day I bought my first pair and frankly I didn’t believe her. Now I do.

The styles available in Australia are not the full range, however styles will change over time and if you are travelling overseas you may find different styles available in different overseas outlets. Just make sure you are getting the genuine article by checking the Kybun stockists page.

Research. Read the Kybun site to familiarise yourself with the product. The English version of the site probably doesn’t read quite the same as the Swiss version, but the basics are covered. There is even a section on “Initial Reactions” as depending on how you are standing/walking now you body may need to adjust. I didn’t have that experience, nor did the people quoted above, but be aware it is a possibility.

These may not be suitable for you. Even if these aren’t, it won’t hurt to evaluate your shoe wardrobe. Ask yourself whether you suffer less pain, or last longer before pain starts, in one shoe compared to another. Get rid of the ones you know are not doing you any favours. I hated giving up my heels – but now I just don’t care! I’m happily walking around everywhere! Yes, I kept my low heeled fashion shoes – there will be social occasions when I want to wear a dress shoe.

If you were a MBT wearer, these are much easier to walk in. There is a MBT v KyBoot comparison page on the KyBun site.

If you already have some Kyboots, please share your experience in the comments.

Electronic Medical Records and Patients

The reverse side of my business card says “Exercise guidance for chronic conditions”. Those of us with chronic conditions often have a team of medical people keeping us healthy. The bane of our existence can be the information involved in our cases. Therefore I feel justified in digressing from exercise and diet topics to take a look at the practicalities of our medical records and information sharing.

In 2015, shortly after I had been diagnosed, I wrote eHealth and the silo culture of medicine, published on the Australian Independent Media Network. In that article I gave the following as an example of why I thought an eHealth system was a great idea.

Once I discovered I was unwell, I signed up for eHealth. The driver for my doing so was a very embarrassing discussion with my gastroenterologist.

Have you had a colonoscopy before?
“Yes, I have, years ago.”
Who did it?
“Ummmm, I’ve forgotten.”
Where did you have it done?
“Ummmm, I’ve forgotten.”

eHealth would solve that problem, nicely, wouldn’t it?

We are now in 2017, creeping towards 2018. I follow a few medicos on social media and happened to notice A new hope for the My Health Record? by Dr Edwin Kruys, chair of RACGP Queensland and vice-president of the RACGP . “Ooooh”, I thought, “Good news!”. The most likely reason I noticed the article fly past in my notifications list was because on Friday I had the exact same conversation with a new specialist. And I felt as stupid this time around as I had the first time. This specialist asked me about my deliveries: was one of my children a forceps delivery? Hmmmmm – yes, I think so. I did remember the episiotomies (does any woman forget?).

Philip Darbyshire, Professor of Nursing, isn’t quite as positive about any new hope. In response to Kruys’ article Darbyshire wrote Is there really “New hope for My Health Record?” Why I think not.

I was sad again. But I laughed. Darbyshire’s article was from the perspective of a patient (yes, even the medical profession gets sick from time to time). His description of his first foray into the My Health record was similar to mine. He also has a similar disdain for faxes, I noticed.

After finally ‘getting in’ what did I find? Absolutely NOTHING. A giant black hole. A blank excel spreadsheet would look more inviting.

Yep, ex-aaactly!

I signed in again recently to see if there had been any improvement. Nothing useful.

Back in 2015 I only had three specialists and a general practitioner to worry about. My current list:

  • Endocrinologist
  • Gastroenterologist
  • Rheumatologist
  • Dermatologist
  • Colorectal Surgeon
  • Ophthalmologist
  • Gynaecologist
  • General Practitioner
  • Physiotherapist

I am also a patient at the Barbara Walker Centre for Pain Management.

On top of that, I have changed general practitioners a couple of times in the last couple of years, due to relocation. Changing general practitioners (GP) is a pain in and of itself. Let’s assume your GP has referred you to three specialists. Referral’s cover twelve months. You relocate, need to change GP. Visit a specialist after relocation. Ask for report to be sent to new GP. No, I’m told Medicare doesn’t allow that. In order for my new GP to be included in the correspondence (or replace the old GP) I need to get a new referral. Is this, or is this not, just plain silly? So I need to find the time to go to have an extra visit to my new GP just to get a replacement referral when my old referral has not run out?

With a decent MY Health record, I should be able to update MY GP and have that flow through the system seamlessly. It is, after all MY health we are talking about.

Getting your records transferred from one practice to another is expensive. I was told I’d have to get a quotation if I wanted the complete file sent to my new GP. I didn’t bother, I used my big pink folder of my own copies of endoscopy results and blood test results. Somewhere I have large envelopes of ultrasounds, MRIs and nuclear bone scans – but I’ll misplace them at some stage – how long should I hold onto these things? The answer is, I shouldn’t have to – they should ALL be available to ANY practitioner I give authority to. MY Health, is it not?

If, as a chronic condition patient, you have any health care plans the date of issue is important – if you change GPs and didn’t keep your copy, then that becomes a problem to be solved.

Then there is the whole blood tests thing. So three of my specialists (at least) all test for thyroid function. Don’t you dare go into a blood collection centre of one specific pathology company with three pathology requests (all wanting thyroid function) from three different doctors on the same day or the pathology company will charge you for two of the tests, rather than do the test once and share the results. I wrote about that back in 2016, If you have regular pathology tests, here is something you should know.

While on the topic of blood tests, you know how they tell you NOT to use your arm after a blood test? Good advice, may I say. Here’s what happened when I forgot.

 

Don’t use your arm after a blood test!

There is space on request forms to copy in other medical professionals. However it isn’t a very large space: I almost need to have a preprinted list to attach these days.

Drugs may interact. Blood test results can be relevant to all my specialists. If I have an MRI this week for back pain, the images are useful to the colorectal surgeon. My physiotherapist retrieved ultrasound results from 2015. This was only possible because I remembered where I had that particular ultrasound done.

MRI
MRI fashion doesn’t improve

In my view of a perfect MY Health record, everything would be stored: blood test results, prescriptions, MRIs, x-rays, CT scans, ultrasounds, treatment/consultation notes. In fact, prescriptions should be electronic, I shouldn’t need scrappy pieces of paper. Speaking of prescriptions, I noticed Real Time Prescription Monitoring survey now open. This is a Victorian initiative, but a decent MY Health record should surely be able to replicate this functionality and save money? Also reduce the number of systems medical practitioners need to use.

Kruys raises some of the challenges.

Doctors have also voiced concerns about the medicolegal risks that come with accessing a patient’s My Health Record, for example when diagnostic tests and images will be available that may not have been reviewed and actioned by the requesting clinician. Clear guidance is required on how the reports are to be handled and who is responsible.

I am a patient, so to me the solution is clear. Those tests and images belong to me and I should be able to let whoever I want to review and/or action them, provided they are suitably qualified. It is my body and I paid for the product (the test/scan/image). Maybe I have decided to not see the requesting clinician any more and surely that is my right? Maybe not in the USA, but this is Australia. Discarding the tests and repeating them is a waste of money.

The amount of time clinicians AND patients spend currently sharing information has to be considerable. Time that could be better spent on clinical hours rather than administration. I’d be better spending another thirty minutes in the gym than scratching around in unpacked boxes looking for old medical records I may or may not still have. Brain fog is a symptom of many conditions – and if it isn’t from the conditions, the meds might give us brain fog. So try as we might we can’t always keep those records in pristine shape. The ones from 40 years ago? Heavens!

Too often, when looking at these sort of systems, the patient gets left out of the discussions. I hope this time around we are included. Of course, getting us to agree is probably like herding cats. Patients who do not want information shared can opt out. For many of us, a comprehensive system would be WONDERFUL!

If healthy people read this and think “Oh, but that’s never going to apply to me!”, yes, well, a lot of us used to say the same. I have a friend who has just become a cancer patient – out of the blue, totally unexpected. If you had asked me in the year 2000 what my health would be like in 2020, I’d have told you I was planning to sky dive at age 70. I still might, we shall see.

As an IT professional in another life, I can well envisage the many issues around a comprehensive My Health record. Secure data transmission, access rights to data, compatibility issues across medical practices and hospitals: the list goes on. None are insurmountable. Correcting typos would be a good start.

 

 

Other issues, such as medicolegal, stepping on professional toes and possible misuse of data also exist. Potential sharing between government departments worries me and strong protections would need to exist to ensure prevention.

I just want to be able to walk into a clinician’s office, open my My Health app on my phone and grant access to that provider to all my records. The lot. That is all.

How about you? What would you like to see?

Update August 29. I spent considerable time again today organising and collecting MRI films on disc because although they are available on-line, the specialist I’m seeing on Thursday doesn’t have access to that imaging provider’s system. Waste of half a day.

The Australian Digital Health Agency has been sharing updates. Here are a couple you may find of interest.

Food scales

Lighten Up to Limber Up

Many people with chronic health conditions are told by their doctor to “lose weight”. Having a chronic condition can mean the weight creeps on, often prior to diagnosis when we don’t know what is wrong, just that we aren’t well. This may continue after we are diagnosed, while we wait for treatment decisions to be made or for treatment to kick in. We may be on a steroid for a while (as I was) which despite the best intentions in the world can result in patients gaining unwanted kilos. Lots of stuff going on that disrupts our normal patterns, can effect our ability to see we are gaining a kilo or two.

How many times do any of us get home from work too tired to cook a proper meal, so we have a toasted cheese sandwich? With Vegemite, of course! Or grab take-away on the way home? Maybe even Vita-wheat, Vegemite and cheese. That’s 232 calories, but not really nutritionally balanced. Doesn’t look too appealing either, to be honest.

Vita-Wheat Vegemite Cheese

In addition, because we don’t feel well, we aren’t exercising enough to compensate for our often less than optimal food choices. We are defeating ourselves from both aspects: too much in, not enough out. We are NOT necessarily able to just ramp up our weights or cardio and burn that cheese sandwich right off. In fact, walking from the car to the lift at work may be as much as we can manage some days. Adjusting to our new activity levels means adjusting to new fuel levels as well.

I can see some readers rolling their eyes already: “I knew she’d get to the weight loss eventually, but I want a coach who isn’t all about the scales“.  Hear me out. Let me assure you I am not all about the scales (actually, I am all about food scales), but I mostly certainly AM about helping my clients attain and maintain a weight that supports their efforts to manage their condition – or conditions. Take a good honest look at my picture below – do I really look like Vogue are going to invite me to appear on their cover next month? Of course not – I am no Australian size 6 – nor do I aspire to be. That photo is 12 months old – taken shortly after my medication change but before I was able to ramp up my own weights, but I have used it deliberately to illustrate the challenge we face.limberation-small-15

What I aspire to is being pain free and in control of my conditions. I’ve achieved that as far as my autoimmune conditions are concerned, but I can still improve my back support (detail later in this article). I am not going to complain if I lose a few more kilograms, but neither am I going to obsess about it. While the lighter I am the less stress there is on my joints, where I am right now now I’m more interested in building strength (to support my joints and increase my metabolism (in turn encouraging those kilos to drop off as a nice side benefit).

Make no mistake, when it comes to your health, the risk of developing a range of conditions is dramatically increased if you are overweight or obese (comorbidities associated with obesity are conditions such as diabetes, heart disease and cancer to name just three) . The risk of negative long term health outcomes are higher if you remain overweight or obese. The medical and scientific evidence is overwhelming.

Being overweight increases the load on joints for conditions such as the arthritis family. The heart has to work harder to pump blood around. If you find doing stuff an effort, imagine how hard your internal organs are working. My lumbar spine is not a lumbar spine I would recommend either – as we get older, lots of bits and pieces tend to show wear and tear, irrespective of any conditions we may have. In my case my lumbar spine is a bit unhappy. So core and glute strength is important for me.

At L3/L4 I have “marked facet joint hypertrophy” and a disc bulge. At L4/L5 I have a broad-based disc herniation and facet joint arthropathy. The complete findings run a full page, that’s just a sample. I don’t need or want to place any more stress on my back by making it carry around extra kilograms or not supporting it with good muscle tone. I still have some intermittent pain we suspect may be the result of this wear and tear, but it is improving.

To give your body the best chance of serving you well for the next 20, 30 or 40 years, you need to take care of it. Especially now a medical condition/(s) is making a darn fine effort at undermining your plans. Reduce the strain on the joints, give your heart and lungs a lighter workload, give your body the right fuel in the right amounts.

Speaking of fuel, when you take your car to fill up the tank with petrol or diesel, the fuel tank has a finite capacity. My car has a 60 litre tank. I can’t put 70 litres in the car. Our bodies are a little more flexible. My body will use an estimated 1,388 calories a day to stay alive: breath, pump blood around, blink (refer BMR Calculator below this article). I’m 62, so my metabolism is already slowed just by the fact I’m not longer 20. If I eat more than 1,388 plus whatever my activity calorie burn is but don’t use it, I’ll just expand. Unlike the car’s fuel tank, my body has no capacity limitations. Nor does yours.

Example: 1,388 + 100 for steps for day + 380 for a strength workout = Total 1,868

If I eat 2,200 calories, guess where the excess over 1,868 is going? Fat stores. That puts more stress on my joints, internal organs have to work harder.

Many of the learned articles on overweight/obesity talk in financial terms of the costs to the community and the country. I’m concerned about the personal non-financial costs to YOU, the individual.

I won’t lie to you. Getting into the groove of eating less calories BECAUSE you are burning less calories is a bit tough initially. As I mentioned in my opening paragraph, it may be a while before you even realise your activity levels have dropped or your metabolism may have slowed as a result of your new friend, your condition. We have to adjust to not burning as much as we used to: it requires us to develop new habits, change behaviours: that is hard. But only for the first few weeks. What bothers you more? A difficult few weeks –  or a tough (possibly shortened) rest of your life? The sooner you take positive action, the shorter the road will be.

Am I saying I never have a Murray River Salted Caramel with Macadamia ice cream (my nemesis)?

Connoisseur Murray River Salted Caramel

No, I’m not saying that. I like to have the things I really enjoy every now and then. I am also well aware that “little” indulgence is worth 339 calories. In other words, worth a whole meal (for my calorie levels, you may be able to have more). If I’ve burnt off 400 calories through activity that day, I can indulge and still hit my calorie deficit target. If I’m having a day where for whatever reason I’ve done very little activity, I make sure I am strict with myself. Keep on top of it, because we no longer have the luxury of going for a 40 kilometre bike ride to pull back a couple of naughty days.

All that discussion was without even looking at ensuring we are getting balanced nutrition. Our body is fighting an internal battle for us now – we need to give it the right nutrients (micro and macro) to put up the best fight it can. That’s a whole different topic for another day!

This article should be read as an introduction and conversation starter only. The concepts discussed are general and not tailored for any individual circumstances. Limberation can provide healthy eating support and guidance.

Additional resources:

PwC report, Weighing the Cost of Obesity

BMR Calculator mydr.com.au

BMI Calculator mydr.com.au

Australian Guide to Healthy Eating

Also check the references on the Science Stuff page.

 

 

Beat the Boom Bust Cycle

BOOM! You feel great! You do all the things you’ve had to put off. What a sense of achievement!

BUST…… Can’t move, feel totally wiped out, no energy……

And so the cycle goes.

While the boom/bust cycle is certainly applicable to pain, today I am looking at another symptom of many chronic conditions, fatigue. Lethargy can be a better description.

If you google “fatigue and rheumatoid arthritis” you will get about 579,000 results. Similar with other conditions. “Fatigue and lupus” will find about 705,000 results.

While fatigue can be, often is, linked to pain levels, I have found it can also not be: I can be fatigued without pain. Thankfully, not nearly as much now because I’ve adopted strategies to manage the fatigue much better than I did in the early days. As will be the case with many people, there may be more than one condition involved. In my particular case, hyperthyroid, a condition that may cause sleep disruption/lack of sleep quality – not something that helps a person suffering fatigue.

I still remember one particular day early in my journey. I woke up feeling FANTASTIC! Off to the gym I went, did a great workout, did the grocery shopping on the way home, changed the linen on the bed: and then collapsed. I had no energy for three days. Not how I want to life my life.

In an earlier article on removing stress from our lives, I spoke of certain practical changes I made. Not all were for stress alone.

The following should be read as ideas. This is some of the things I’ve done: all, some or none may work for any other individual, or may simply prompt thoughts about what might be applicable in your own situation.

Depending on how aggressive your condition or conditions are you may not need to be this drastic. Lifestyle changes such as exercise, eating well, ensuring adequate hydration and good sleep hygiene may be sufficient. The Arthritis Foundation has a short introductory article on beating fatigue with lifestyle changes. I certainly incorporate all those (especially the exercise, of course) in my life!

Don’t Overdo It!

Rule Number 1 is the same as Rule Number 1 for pain management. On the “BOOM! I feel so good today” days DO NOT rush around madly doing a list of things a mile long (shopping, go to the gym, vacuum etc etc). Especially in the early days (battling the guilt of not getting things done) we can go completely overboard on the BOOM days. Guess what? The next few days are awful. BUSTed. Then we feel awful again because we aren’t doing what we feel we should be doing…… around and around it goes.

Even now, I never do my grocery shopping the same day as I do a strength workout. I don’t do a strength workout the days I go to my day job. I do not check my work emails on the days I am not in the office (that took discipline, developing and sticking to that rule). I plan ahead and I PACE myself carefully.

RELOCATION

When I was appointed to my current role, I lived a considerable distance from my new work location. I love driving, but spending an hour in peak-hour traffic in the morning and up to two and a half hours getting home after eight hours in the office was NOT a happening thing. Not only did I find driving on the freeway in second gear extremely stressful, an eleven and a half hour day was just way too much. The best solution for me was to relocate closer to work.

I can now drive door to door in ten minutes, or I can take a tram and be there in twenty minutes. No stressful driving conditions and a much shorter day.

Reduce Working Hours

This is a tough one. Again this is an aspect of life that can relate to both stress and fatigue. If you are fatigued, you are less likely to perform as well at work and that creates stress (and in some cases, guilt). If your work is being a mother and a wife, the same feelings can apply.

In either situation, reducing working hours can be difficult. There are financial implications of reducing paid hours of employment. For a mother, who is going to do the work?

I have been extremely fortunate and am extremely grateful for my situation. The reduced hours I work allow me to feel I am professional and effective when I am in the office, yet I get enough time to ensure my exercise regime is followed, I can prep meals on a day off for the days I work and I get adequate rest. I can also schedule medical appointments on my days off without feeling guilty for taking time off work.

No, financially it is not as beneficial as working full-time. But I am a lot healthier.

Exercise

Yes, well, it goes without saying that would be high on my list of recommendations! Limberation would not exist if I did not believe so strongly in the benefits of exercise. I won’t repeat my How Tough is it to Get Moving article here, I’ll just repeat, when I say exercise, I’m not suggesting you rush out and start running 10 km a day!

The days I do strength workouts I ALWAYS sleep well that night. Exercise has definitely helped alleviate my fatigue.

Healthy Eating & Hydration

Particularly, I have found, a problem if you live alone. When you are so tired you can hardly keep your eyes open (but of course you can’t sleep either), perhaps also in pain, maybe also stressed because you missed that important deadline at work or missing the school concert: guess what, taking the TIME to eat properly, or even enough, just seems to fall by the wayside.

Once I started making sure I ate enough protein and stopped depending on “easy” solutions such as toasted cheese sandwiches, I did indeed feel a lot better. The meal prep mentioned above is not just about time, it is also about ensuring I have nutritionally balanced meals right there when I am too tired to cook.

Drinking enough is also crucial. I find I am good on the intake when I am at work or the gym. I am slack when I am home – the water bottle always seems to be where I am not and I forget. I certainly know about not drinking enough later on though.

Don’t Worry About the Ironing

Or the vacuuming. Or polishing the furniture (a quick dust will do). Yes, you must feed the cat, dog, fish or bird if you have one. Vacuum one room a day. If you are in a family environment, delegate the ironing if possible: if living alone a) buy clothes that don’t need ironing or, b) iron one thing the night before. Hide the ironing basket in a cupboard out of sight, not only of visitors, but out of sight of yourself so you won’t be tempted to overdo it!

Sleep Hygiene

There are lots of different sleep hygiene strategies/techniques you can try, from breathing techniques to relaxation music, yes, even counting sheep will work for some. Temperature of the bedroom is important, put the screens (iPad, phone, TV) away well before bed-time. Talk to a professional about strategies that might work for you.

This one is an ongoing challenge for me, so I have no brilliant suggestions of my own to share. I know it is important and I’m working on it!

Why the Cat?

Why is my cat the photo? Because Cleo is doing what we must all do. Learn new things, within our restrictions. I don’t have an area I can let her experience the great outdoors freely. Learning to adjust to a harness and lead allows her experiences she would otherwise not be able to have.

Our harness is learning to PACE ourselves, so we can still have adventures.

Additional Resources:

A very interesting media release from 2007 by Arthritis Australia is worth reading, Women’s Insights into Rheumatoid Arthritis.

How tough is it to get moving?

You may be asking yourself “How tough is it really, to get moving?” This may be moving again or starting from scratch. I’ll be honest, it may be tough-ish. How tough (or easy) will depend on many aspects: your specific condition, were you diagnosed early and therefore received appropriate medical care early, your pre-diagnosis level of activity, the medications you are on, the symptoms you specifically experience, do you have a chronic condition or are you in recovery from treatments such as chemotherapy.

The aim  of moving is to prevent de-conditioning, which I spoke about in Launching Limberation. Specifically here I am referring to pain management, but the benefits extend beyond this.

My Journey

I’ll share some of my own journey but as you read please be aware your situation may be entirely different. I do use time, distance and weight in this article to provide a sense of progress. Different people, different situations, different numbers, different timelines. What applies to me may not apply to anyone else at all.

Thankfully, I wasn’t completely starting from scratch – while I’d had an activity hiatus for roughly four years, I did have a gym junkie background to leverage. Or so I thought. In the beginning it certainly didn’t feel like I was leveraging anything!

Because I was diagnosed with two different autoimmune conditions at once, my medical team advised we stabilise one condition (hyperthyroid) before attempting to treat the other (autoimmune arthritis). Fatigue was a major problem for me in the beginning. Coping with getting to and from work, work itself and home life was draining what energy I did have. There was basically nothing left in the tank in the early days.

At the Starting Line

When I did start, I started very slowly. I did five minute walks four times a day. It didn’t take me long to realise I felt better when I moved. Pain and stiffness receded very quickly once I was actually MOVING. I increased to ten minute walks, three times a day. Finally I got to twenty minute walks, twice a day. I also moved as much as I could during the working day: sitting was hell. Even now, writing this in my home office where I do not have a sit-stand desk, I will not sit for long. No amount of activity is too small to start.

I didn’t do any strength (resistance) work at all in the beginning. I added some swimming: gone were my 2.5 km sessions: my physio was advising I swim 250 metres. I mumbled and grumbled that 10 laps wasn’t worth getting in the pool for, but I did stick to her advice the first time. The inflammation was also in my shoulders, meaning I had to strengthen my shoulders: be able to do 20 prone shoulder rotations (each side) daily with a 2 kg weight before I was allowed back in the pool.

Resistance Work

I wasn’t until late 2015/early 2016 I got back on the weights. I’d always liked the leg press, but had no idea what I should try to start with. Prior to the autoimmune arthritis and the hyperthyroid diagnosis, I’d been diagnosed (by MRI) with meniscus tears in my left knee, not a lot of cartilage to speak of and I’d had a Synvisc shot. I was understandably cautious, but knew I was continuing to lose muscle strength which wasn’t going to help me long term at all. I needed strength to support my joints, especially the damaged ones.

I loaded 10 kg weights on either side of the leg press and felt SO frail. I was in my school gym – most (not all) fellow fitness students were athletic and I felt like I didn’t deserve to be there. 20 kg was perhaps overly cautious. I upped the weight to a total of 60 kg quite quickly. From 60 kg to 100 kg took quite a bit longer. If I recall correctly, I got stuck around the 80/90 kg mark for quite some time. One of the issues was not actually physical by then – it was not knowing what was safe for me to aim for and no-one I asked was quite sure either. Will I ever get back to 200 kg? Right now, I doubt it – and you what? I’m OK with that. I know I have achieved what I set out to do – stay off pain medication. I’ll let the healthy people worry about 200 kg leg presses.

Climbing back up

Ultimately I asked my rheumatologist, who is very supportive of what I am doing, “How far is it safe for me to go? I don’t want to damage anything”. He is well aware I am using my own body as a research subject. He smiled and said “You’ll be fine. You’re sensible. Back off if it hurts.” After that I was more confident to push myself. I am careful. I don’t subscribe to the “no pain, no gain” philosophy – after all, pain is what I am working to manage, I don’t need to have more of it. Pace, incremental gains, no lifting to failure. My definition of “push myself” is not the general fitness industry definition – for very good reason.

I have just, this month, August 2017, managed to do a dumbbell bench press with 12.5 kg dumbbells (25 kg). I started back at 5 kg (10 kg total): it has taken me over 12 months to get to this far.

Other Considerations

Sometimes progress stalls. I find I lose gains very quickly if I miss a strength workout. Whether this is due to medications, the conditions themselves, my age (yes, I do have to consider that these days) or a combination of all three, I’m not sure. I’ve searched for research around such questions but have yet to find anything specific.

In late July 2016 I had a change of medication. I found this helped dramatically with the fatigue and therefore it has helped all the other aspects of my re-conditioning.

I don’t run. My knees are pain free and I want to keep them that way so I just don’t risk putting them through jogging or running. I walk a lot. I walk to my Pilates classes, I walk to or home from the gym, I walk to the next tram stop. While I’d love to get back to 10,000 steps a day, I’ll settle for 8,000 plus my other activities. I do indoor rowing, great whole body exercise.

In 2014 I could swim a 2.5 km session. In 2016 I was finally allowed by the physiotherapist to swim 250 metres. Now I’m back to 1.2 km sessions. Sometimes I only swim 800 – it depends on how I feel and how my shoulders feel. The message here is listen to your body at all times. Don’t use that as excuse to not do anything – but listen to your body. On Saturday I did my usual strength workout: I had every intention of increasing that leg press again, hopefully by 10 kg – I was aiming for 140 kg. As soon as I did my warm-up set I knew for whatever reason today was not the day. My strength was just not there. I suspect it was lack of dietary protein the day before – I’m currently monitoring how I feel against my dietary protein levels as mentioned on the Science Stuff page. So I simply did not try any increase. Next week will do, there is no rush, I’m not competing with anyone. I didn’t go backwards and that is my focus.

I’ve added Pilates to the mix at the suggestion of my physiotherapist. While this may look easy (looks like I’m doing absolutely nothing, doesn’t it?), trust me, after ten of these retracting the scapulae and opening the chest, I don’t want to do any more until the next day!

Objective Achieved!

As you can see, it isn’t achieved overnight. I’ve worked at it. Slowly, but surely, I’ve achieved my original goal: to stay off pain medications. Now on to the next goal, which is to help others in similar situations.

Will you give movement a try? Contact me for a preliminary chat. Limber Up to Live Life.

Disclaimer: This article is based in part on personal experience and is of a general nature, not tailored for any individual circumstances. Where appropriate, readers should seek medical clearance before embarking on an exercise program. 

Get the Stress Out of Your Life

Being diagnosed with a chronic condition or conditions is stressful. You will notice part of my coping mechanism is I don’t use the word disease. I talk about conditions. I’ve learnt to accept I have a condition, I’m not ready to use the word disease. I’m in my third year post-diagnosis and I’m still adjusting.

Finding out you are not well is a difficult time. So many questions:

  • What does my future hold?
  • How bad might it get?
  • Will I become a burden on my family?
  • Will I be able to do my job?
  • How fast does this condition progress?
  • Will this shorten my life expectancy?

These are just a few of the many, many questions that will run through your mind. Worrying about the answers is, yes, you guessed it, stressful. The answers will ultimately be different for different people. I met a fellow patient in the gym one day. Diagnosed with rheumatoid arthritis in his late thirties, he was forced to give up work in his early forties. He is now in his early sixties. He is still doing everything he can to stay as well as possible – I met him as we worked on adjacent rowing machines. He told me he has had several operations over the years and lack of energy/fatigue is one of his major health issues.

I was diagnosed in late 2014, I am still working, swimming, walking, lifting weights: I am careful about how much I do, but my life has not, yet at least, been affected as dramatically as his life has been. I’m in a much better state of health now than I was in 2014: hopefully I can continue to improve or at least stay as healthy as I am.

I compare the two cases to illustrate in those early days there are no immediate answers. Any of us can be at either extreme or anywhere in between. I worked with a young woman who was having her first baby. She told me in her very early twenties, shortly after she was diagnosed, she could not hold a toothbrush or do up her bra. Yet here she was some years later working full-time and about to have her first child. Try not to worry about the unknown: easier said than done, I know. It took me quite some time to stop worrying about what I could not control.

Your doctor may well have said to you something along the lines of “Get the stress out of your life”. Great – you just gave me more stress and you are telling me to get stress out of my life? Terrific!

We all live with a degree of stress in our lives. Making sure we get to work on time, pick the kids up from school, stretch the budget until next pay day, find the money to fix the water heater than just blew up a week out of warranty, dealing with the daily commute, an upsetting disagreement with a partner, difficult challenges at work. In modern life we have so much packed into 24 hours, many of us don’t get enough sleep which in turn doesn’t help our health or our ability to deal with stress.

There are major stressors: the death of a loved one, changing jobs, moving house, divorce. The Holmes-Rahe Stress Inventory allocates points to many life events. They also developed a statistical predictive model, predicting the probability of a subsequent adverse health event based on a person’s stress score.

In 2012 the Carnegie Mellon University released study findings: How stress influences disease: Study reveals inflammation as the culprit. Then there is Stress as a trigger of autoimmune disease, a study looking at the relationship between stress and autoimmune conditions. This is just three of the many, many studies that have been done.

Stress may also lead to condition flares: all of a sudden the condition will go crazy bad for no apparent reason. As an example, one day I woke up unable to use my right arm, the pain in my wrist and hand was excruciating. I spent the day with my hand in the comfort position (think of an arm in a sling, hand higher than elbow). By 3 pm in the afternoon that flare had faded. Luckily. It may not have been stress that caused that particular flare, I will never know for certain, but I suspect it may well have. We are well advised to minimise stress.

What can we, as patients, do to reduce stress? Re-evaluating what is important to us is a good place to start. If we have a big home with a massive garden, we need to consider do we really need that. Is hiring a gardener and a housekeeper feasible? Can we delegate tasks to other family members? While every person is different, I can spend an hour in the gym lifting weights with no pain at all, yet I end up in pain every time I change the linen on the bed. If I spent an hour in a garden on my knees pulling weeds I’d be in serious trouble afterwards. If we hold onto that garden or the house, we then stress over the things we can’t, or shouldn’t, be doing. By the way, there is nothing wrong with vacuuming one room a day if that is what we need to do – it can be as simple as ensuring we pace ourselves. I discuss pacing in a future article. Consider downsizing (not possible for everyone, of course). Adjust how you do things – I leave some thoughts at the end of this article.

Work may be another challenge. Depending on the hours worked, the type of job and the specific symptoms any individual experiences it may be worth reconsidering how we earn our daily bread. Making that decision can be stressful in itself: there are possibly financial implications and certainly psychological implications. We may have to fight feelings of inadequacy or incompetence because we can’t work the hours we used to or do the tasks we used to do.

Fatigue is one symptom that isn’t always given a lot of attention, yet can be extremely disruptive to our lives. It is also a symptom I have struggled with during the last four years. The feeling of uselessness was at times overwhelming. I went from being a person who did everything at “100 miles an hour” (according to a girlfriend, that is) to someone who has learnt if I go at 100 miles an hour today, I’ll be useless tomorrow. Adjusting to this new way of living and working can be stressful. We want to be just the way we were before. We can slip into old ways of being and then pay the price the next day – or for two or more days. Be kind to yourself: easier said than done for many of us.

We may also feel physically inadequate or incompetent (there it is again) compared to our past selves. The first time I tried to do a leg press again I found I had to start at 20% of what I had been able to do in my heyday. To me that was devastating. I felt like I was a shadow of my former self. Who was I now?

Brain fog. Yes, folks, brain fog is real. Very real. That also leads to feelings of inadequacy/incompetence until strategies to manage it are developed. Even then, nothing is fool proof. I’ll share one little recent example. My real estate agent called. Why was she calling, I enquired. In response, apparently, to my call the previous Tuesday. Me? I called? No, I’d thought about it, but didn’t have time. I was adamant I had not called, maybe one of my neighbours had. Given the topic was a garage door frequently mysteriously opening of it’s own accord, it could have been a neighbour. Well, no. When I checked my phone log, I had indeed called. Brain fog.

I recommend talking to your GP about a referral to a psychologist. Adjusting to being sick is not easy. Having a professional help you work through that emotional adjustment can help ease the stress. Plus, to be frank, you can vent about the whole situation without feeling as if you are driving your family nuts: that alone can be helpful. Ask if you qualify for a Mental Health Care Plan (in Australia) if appropriate.

Exercise is a great way to help manage stress, depending on your current capacity to exercise.

Some things I have done:

  • Downsized – I live in a small apartment. Less vacuuming, dusting, floor washing;
  • Developed a career change so I can stop sitting;
  • Dropped my working hours (although with a new career based around movement I hope I will be able to do more hours, we shall see);
  • In my current part-time accounting role, I have a sit-stand desk, which helps immensely;
  • Learnt to accept I have a chronic condition – that is perhaps the hardest part, accepting;
  • Bought an upright vacuum cleaner so I don’t bend when vacuuming;
  • I don’t do all the ironing at once (in truth I do as little ironing as possible at any time);
  • I cook a week’s worth of meals on a Sunday so I don’t need to cook after a day at work (slow cookers are great for this in winter). Freeze and build up a variety;
  • I plan my activities a week ahead – I never do the grocery shopping and a gym workout on the same day, although I will swim and grocery shop on the same day;
  • Make time to look after my body: swim, strength workouts, Pilates, physiotherapy;
  • Make sure I get enough good sleep;
  • I eat well (most of the time – I’m no saint);
  • Resist the ever-present temptation to work when I shouldn’t.

There are some stresses in life we can’t avoid or control. Those we can control, we should.

For our health.

If you have tips and tricks, please share in the comments.

Lifeline Australia can be contacted on 13 11 14 and is a confidential telephone crisis support service available 24/7 from a landline, payphone or mobile. 

Disclaimer: The author is not a mental health professional. The concepts discussed above are based in part on personal experience and of a general nature, not tailored for any individual circumstances. Readers should consult their medical practitioner or allied health professional for personalised advice.