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.

Brain Fog? Cognitive Impairment? Which Sounds More Serious?

As a chronic illness patient, I am over the term brain fog. Let’s be honest here, it is cognitive impairment. Two years ago when I wrote “Yes, Brain Fog IS a Thing“, I was more concerned with ways to deal with it on a day-to-day basis than investigating the neurological, physiological or immunological causes or possible relief.

Cognitive impairment is a symptom experienced by MANY people with chronic conditions, irrespective of age, yet the term is more commonly associated with older people. Google cognitive impairment and nearly every result will couple cognitive impairment with “the elderly” or “in aged care” and similar phrases.

All is not lost, however – there IS recognition! And hope!

Cognitive disturbances, mood disorders and fatigue are common in SLE patients with substantial adverse effects on function and quality of life. Attribution of these clinical findings to immune-mediated disturbances associated with SLE remains difficult and has compromised research efforts in these areas. Improved understanding of the role of the immune system in neurologic processes essential for cognition including synaptic plasticity, long term potentiation and adult neurogenesis suggests multiple potential mechanisms for altered central nervous system function associated with a chronic inflammatory illness such as SLE.

Source: Lupus brain fog: a biologic perspective on cognitive impairment, depression, and fatigue in systemic lupus erythematosus

“Cognitive disturbances”. Not quite enough in my view. The title does, however refer to cognitive impairment.

Although widely used, I find brain fog to be a somewhat dismissive term – it just does not sound as serious as cognitive impairment.

Because mine was relatively minor, only really noticeable to me, I asked other patients about their experiences. Here’s what they had to say. I am sorry I couldn’t use all the responses I received!

“To me it’s like trying to fight through treacle.” ~ A

“I cant cope with multiple processes. I need things written down.” ~ J

“One recent trip [overseas] hubby went on, the flight wasn’t direct and took more than twice the time to get there. I was hysterical, and had zero recollection of the change in flight timing.” ~ N (Note, this patient does have a Functional Neurological Disorder diagnosis)

“… impossible to do more than one thing at a time. I can’t cook and carry on a conversation. I can’t wash clothes and pay bills …” ~ T

“I just don’t trust myself with details anymore. When making med appts etc I check and double check and still get things wrong. My confidence is so low when doing paperwork etc” ~ J

“I sometimes think it is more debilitating than the pain as I have learnt to push through the pain but I can’t push through the fog.” ~ M

“When my brain fog is bad I cannot process people’s speech. I describe it as words floating past me like pretty butterflies – I hear them so know they are there, but they have no meaning.” ~ F

“I wish more people understood that it’s not just being forgetful.” ~ Hannah, who writes at Sunshine and Spoons and has ehlers danlos syndrome.

Language is important. The terms we use are important. Cognitive impairment is damn important.

In chatting to my gastroenterologist one day, I complained about cognitive impairment. I said to him, “If I were a doctor, I would have to give up practicing.” His eyes nearly popped out of his head. “Really?”, he asked. He and I have known each other quite some time now – he knows I am not the type to exaggerate. I knew from his reaction I had spoken in a language he understood.

The reality is I could do my accounting or IT roles in a wheelchair. True, my personal trainer hat would be more difficult in that case. I can’t do those jobs without my cognitive abilities. If I do make a mistake though, I am not risking anyone’s health outcomes. If I was a surgeon, in the middle of surgery and I forgot or could not decide where to cut next: that could be a problem. If I misread a blood test result, or prescribed the wrong dose of a medication (although pharmacists are a double check with prescribing) the impact on the patient could be negative.

Although my cognitive impairment has been very mild compared to other patients, I would still notice it. I knew it was there. In the early days of my illness, before we got things under control, it was worse. Even so, I was so ecstatic when this happened:

Remembering that number was so fantastic (to me) I emailed the clinical trial co-ordinator to tell her! I was in a meeting at the time and I was clearly excited. I was ecstatic! I have written before about brain fog – like fatigue, it is something many chronic illness patients battle with.

Source: A Clinical Trial – Patient Journey – Part III

Of course, fatigue and cognitive impairment go hand in hand in many situations. This is well known and why workers should not be driving home after very long hours. Yes, they could fall asleep at the wheel, but also their reaction times will be impaired.

The quotation above from the SLE study indicates how difficult research is into this area, as it is with fatigue. There can be SO MANY contributing factors: the underlying condition, medications, pain, fatigue, poor nutrition, lack of adequate hydration, lack of exercise, poor sleep, onset of menopause, age (MCI for example) – the list goes on. My objective is to highlight the seriousness of it. I would love to see the term brain fog done away with. When I mention it as a symptom, I want to see the reaction I got from my gastroenterologist – acknowledgement that this IS A SERIOUS ISSUE. Let’s have a serious name for it.

I have REALLY noticed the improvement, since the new medication kicked in. I feel my reaction times when driving are normal, I remember where I put my glasses, I’m writing (you can judge whether I’m writing well or poorly!), my concentration lasts well into the evening, I don’t need a shopping list.

This is great for me, but my thoughts are of the other chronic illness patients out there struggling to get their health providers to acknowledge the seriousness of this particular symptom on their quality of life – including employability. I’m also well aware that even if it IS acknowledged, we may be a long way from finding solutions – but if science don’t consider it a serious issue, science won’t look for solutions.

After I wrote the fatigue article (linked above), I had one patient say to me she has simply given up mentioning fatigue to her doctor. I understand why, but we can’t give up because then doctors don’t see it as being as important as it is. Unless, of course, they suffer one of these conditions themselves and have been through it.

In the five years I’ve had my conditions, I’ve been asked MANY times about my pain levels. About my mobility. I do not recall EVER being asked about fatigue or cognitive impairment. Now, to be fair, the generic “How are you feeling?” could be an all encompassing question, but I’ve never got the impression it was including either of these symptoms by default.

So – over to you, fellow patients!

  • Do you experience cognitive impairment/brain fog?
  • Do you prefer “cognitive impairment” (or some similar name) or “brain fog”?
  • Do you, as a chronic illness patient, feel cognitive impairment as a symptom of your underlying condition is seen as important by the medical profession?
  • What impact does cognitive impairment/brain fog have on your quality of life?
  • Do you feel in your case it results from pain, medications, fatigue or is it a separate symptom of your condition?
  • Do you think your family and friends understand your cognitive impairment/brain fog?
  • Has it impacted your career, work choices or employability?
  • If you are a family member of a chronic illness patient, do you feel you understand?
  • In your experience, is cognitive impairment/brain fog adequately recognised?
  • Anything else you would like to share?

PLEASE NOTE: Cognitive impairment can be caused by a great number of medical situations and can range from annoying to critically serious – this article is ONLY addressing where it is a symptom of an underlying condition, such as described in the SLE quotation provided above. If you are concerned about ANY change in your cognitive abilities, please consult your doctor.

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:

11 Tips for Dealing With Major Disruptions to Your Routine

I’ve been very quiet of late. There IS a good reason! Sometimes, despite the best laid plans of mice and men and women, our lives, our carefully planned routines, are disrupted.

A quick recap of the situation prior to the disruption. In 2016 I started part-time employment in a location that was a LONG way away from home. Relocating close to work was one of the lifestyle adjustments I made as discussed in Beat the Boom Bust Cycle.

This year, I had to move. As it turns out, this has been a GREAT change, but all of a sudden I was faced with home hunting, packing, organising the move, the paper warfare relocation involves and all the other bits and pieces that go along with moving. All on top of my normal daily commitments. Clearly, PACING was paramount if I was to come out the other side relatively unscathed!

I knew I just could not do it all without risking an arthritis flare or some other health set back. Writing was put on the back burner: it was one of the things that was, in reality, not a “Must Do” on the “To Do” list. Packing certainly was! Getting utilities connected certainly was!

The benefits? Beautiful leafy block (pictured above), quiet suburban street, cheaper and (best of all) GROUND FLOOR!

I didn’t come through it totally unscathed. Clearly moving is stressful at the best of times plus my rheumatoid arthritis medication is a immune suppressant. PLUS it IS winter! So I caught a virus about two weeks after moving day. I try to avoid catching bugs, but I think the body was ripe for invasion given the aforementioned circumstances! I was out for the count for several days!

Other life events that can be physically challenging include weddings (our own, or a family member), family holidays, community events we may be involved in organising, school fetes; the list is endless.

If it is a wedding and you are mother or father of either of the happy couple, the lead up is full of additional activities and you want to be in the best shape possible on the day.

Here are my tips for keeping our body healthy when we face a complete disruption to our physical routine that has the potential to cause us pain or a condition flare.

  1. Plan, start preparations early. Stop what you are doing if pain starts. Build rest periods into your plan.
  2. Accept help! My daughter and son-in-law helped me pack. A friend helped me unpack at the other end. If you are involved in the organisational stages as well as “on the day” or post-event clean up, make sure you do not say, “Oh, no I can manage”.
  3. Take annual leave if possible. I took a week.
  4. DO NOT be tempted to “help” the removalists on the day (if you are moving, otherwise adapt this tip to suit your situation). You organised help for a reason: whether they are paid experts or volunteers, resist the urge to throw yourself into the physical fray.
  5. Maintain your daily stretching regime. It can be easy to let such things slip when faced with exciting things going on. Your stretches are even more important now to counteract the pressure you are putting on your body.
  6. You may also have prescribed remedial exercises to do – maintain those too, for the same reasons.
  7. Ensure you get adequate sleep.
  8. Pay attention to your posture. With all the bending I was doing, I was diligent about hinging at the hip to ensure I minimised pressure on my spine.
  9. Do something appropriate to support your body during this time. For example, I booked a massage the second day after the move to iron out the niggles.
  10. Eat well, ensure you consume enough protein. Stay hydrated.
  11. If this is a big social event (rather than moving home), I strongly recommend continuing to wear your usual shoes on the day (in my case kyBoot shoes). While you might get away with “pretty” shoes or heels for an hour or so, any longer could well result in pain which could be very unpleasant on the day.

Every person is different, every person’s objectives and capabilities are different. If you are father of one of the bridal couple, your one burning desire for the day may be to walk your child down the aisle and maybe walking is your personal challenge. Plan ahead, practice, seek advice from your allied health providers well in advance. If necessary, consider adaptations: for example, at the recent royal wedding Prince Charles didn’t walk the full length of the aisle with Meghan.

Yes, I did resort to Panadol and a heat pack on my back the actual day of the move, but I have even impressed myself with how well my body coped (apart from the darn virus). The annual leave certainly helped, as I was not under pressure to rush. I could work unpacking for an hour, rest for an hour, do my stretches, get my exercises done; all without feeling as if I needed to hurry or as if I should be somewhere else.

Get back to your normal exercise routine as soon as possible. I took a day off from organising the new place to have that massage and go for a long walk.

My main objective, aside from a successful move, was to ensure I did not undo all the good work I have done to date. I did not want a rheumatoid arthritis flare. I was confident if I made sure I took my physical limitations into account, accepted or asked for help as necessary and took my time, I would be fine. Was my back a little stiff? Yes, a little, but at no time was I in excruciating pain or taking strong pain medication. I didn’t expect to come through it without my back grumbling a little, given the degenerative damage.

I have boxes that need lifting to the top shelf in the wardrobes: they are not hurting anyone sitting on the floor and that is where they are staying until someone better able to do it visits! Yes, it is tempting, but I’m NOT doing that to myself! Stick to your rules! Some of us are all too susceptible to striving to be “normal” and do what we used to be able to do. That is not a good idea! My study looked like this for several days (don’t tell anyone, but it still looks very similar) but it isn’t hurting anyone and I stay in one piece physically.

I ventured, for the first time EVER to Ikea and bought a small dining table and chairs that I assembled all by myself! This is a terrible photo, but I am proud I survived the move well enough to do this! It is an extension table, ideal for apartment living, so was more complicated than a straight table.

While unpacking, I came across this poem. Some days, like moving day itself, stuff just has to be done. But afterwards? Keep this in mind!

“Dust if You Must” ~ Rose Milligan

I painted my nails instead of dusting!

Last thought – amazing the things you find when you unpack stuff.

Here is me in a Melbourne publication in 1998.

Four Simple Tips

Sunglasses

I wear glasses. I also have prescription sunglasses. Eye protection is important and the Cancer Council has eye protection advice.

One problem with prescription sunglasses is situations where the ambient light changes instantly. Such as driving into an undercover car-park (work, supermarket). I go from protecting my eyes from the sun to not being able to see and risking poor Benji’s front guard.

I have found transitions lens are not ideal as they don’t actually go dark enough while driving, due to the windscreen reducing activation.

Very annoying. I found a solution. Sunglasses that go over one’s vision glasses.

Just like this.

No, not as much of a fashion statement as my prescription sunnies, but I can whip them off as the car-park boom gate opens. No fumbling around badly/madly to actually change glasses while also trying to change gears.

Opening Jars

Many people with chronic conditions find they lose grip strength. Grip strength is actually an interesting health metric.

Grip strength is related to and predictive of other health conditions, although the relationship is not stated to be causative [4,8]. Normal hand grip strength is positively related to normal bone mineral density in postmenopausal women, [9] with some researchers suggesting that grip strength be a screening tool for women at risk of osteoporosis [10]. Longitudinal studies suggest that poor grip strength is predictive of increased mortality from cardiovascular disease and from cancer in men, even when factors of muscle mass and body mass index are adjusted for [11,12]. Hand grip strength is negatively associated with physical frailty even when the effects of body mass index (BMI) and arm muscle circumference are removed [13]. Researchers have suggested that the factor related to frailty and disability in later life is the manner in which muscles are used, and this can be measured by hand dynamometry [13].

Source: NCBI

The scientific community, while clearly finding grip strength interesting to investigate, are not around when I need to open a new jar of marmalade. This wonderful little gadget is a life saver.

Can opener

As much as I resisted buying it because doing so made me feel old and decrepit, it is a marvelous little aid in the kitchen. I got it from one of those kitchen shops, I don’t remember which one. I can confirm these work brilliantly and I have yet to find a top that didn’t fit.

Vacuuming

Bending, technically flexion of my lower spine, is not something my back likes. My back reminds me of this in no uncertain terms every time I change the linen on the bed. Vacuuming is something that can result in us looking more like a cashew than correctly hinging at the hip.

I got myself an upright vacuum cleaner.

Upright the top of the handle almost reaches my armpit, maybe 5 cm short of my armpit. I’d measure it, if I had a measuring tape! Suffice to say it is much easier to stay upright when using this style of vacuum cleaner. Mine is a Shark, but I am sure there are other brands around. It also has fantastic suction, good for all the cat hair I invariably have to vacuum up every two days. Best of all, it wasn’t prohibitively expensive.

It has just occurred to me how to solve my linen changing problem – get a bed I can raise up to a height that allows me to stand upright! Not a lot of those around that don’t look like hospital beds though. But it is a thought! Seriously, I am going to focus on hip hinging when I do the bed.

Scalp Health

As I described in EXTRA Slip, Slop, Slap Needed, medications have resulted in skin issues for me. I know others suffer similarly. My situation does not exclude my scalp and I have a prescription lotion to apply. Entirely unrelated, my hairdresser sold me some leave-in spray to provide protection to my hair from the heat of hot rollers and hairdryers. It was suggested I could just use this as conditioner.

Interestingly, now that I no longer use conditioner in the shower, which of course actually gets on the scalp, I am using the prescription lotion far less frequently. Maybe once a month. It seems that in my case, even though I rinsed to the nth degree, conditioner may have been an irritant. Now using a product that only goes on the actual hair, I have seen a marked improvement. This may not be a solution for anyone other than me, but I thought it worth mentioning.

Yes, I know – my reflection is in picture of the bottle. I’m a personal trainer, not a photographer!

What simple tips can you share from your experiences?

You Look So Healthy!

Yesterday a fellow chronic illness patient shared she was in tears. A friend had told her she looked “so healthy”. So why was she crying? Even she was not quite sure, but several of us put our heads together and discussed the situation.

Tell us we look stunning, beautiful, handsome (men are chronic illness patients too), a fashionista even. Please be careful using the word healthy. If you have a friend or family member who has a terminal or chronic condition, perhaps reach out and ask them what compliments are safe. You want to compliment your relative or friend without using a word that can trigger sad feelings. For some it is the word “healthy”, for other patients there may be other words. Perhaps for a man “strong” maybe a trigger. Men – feel free to chime in with suggestions in the comments section!

If I put myself in another’s shoes, a healthy person’s shoes, imagining I know nothing about being sick, I possibly could think, “What would a sick person like to be? Healthy, that is what my sick friend would like to be“. I can see this imaginary healthy me thinking I am giving positive vibes to my sick friend. When I say “you look so healthy” I think I am being complementary. I am hoping to cheer my sick friend up.

However, for many of us sickies (also known as #spoonies), healthy is a bridge too far – yes some of us MAY go into remission or get close to it, but someone saying we look healthy can be a strong reminder we aren’t – and in many cases never will be again. It can hurt.

The word healthy can play tricks on us too. We can feel like you are doubting whether we are actually sick: that can feel as if our illnesses are being invalidated. One thing we need so much is the understanding of our loved ones. If we feel doubt from you, even though you don’t mean it, it hurts emotionally.

You look SO healthy” can make us cry because we want what we can’t have. No matter how hard we work at accepting our situation psychologically, no matter how hard we work physically at strengthening our bodies to manage the pain (if we can – I am lucky, I can, some can’t), most of us DO NOT like being “sick”. We don’t like not having the energy or mobility we used to have. We don’t like the side effects of the medications we take, or the myriad of potions and lotions we may have to apply. We don’t like having to cancel social events because of a condition flare. I could go on.

In a support group I am a member of I often feel a bit of a fraud – many of the members are much, much sicker than I am. To put that in perspective, this is my list:

  • rheumatoid arthritis (but maybe psoriatic arthritis, or both) (autoimmune)
  • hyperactive thyroid, multi-nodular goitre, Graves disease (autoimmune)
  • diverticular disease (most of us have some degree of this, by the way)
  • sliding hernia
  • bulging disc, lumbar spine
  • herniated disc, lumber spine
  • arthropathy and hypertrophy of various facet joints
  • scoliosis lumber spine
  • photosensitive eczema (result of medications)
  • other skin stuff going on (medications again)

That’s after I’d already lost all the “optional extras” (as one professor put it): tonsils, appendix, uterus, gall bladder.

HEALTHY people will read that list and probably have a reaction along the lines of “OMG, how are you still alive?” Easy, actually, but I’ll get to that! I am one of the healthiest sick people you’ll likely meet and I am well aware of that. That is MY list of conditions – yet compared to many other members of the group, I am in fact “healthy”. I do strength training (I can leg press 160 kg), I swim, I am on NO pain medication. Yet I cannot work full-time, changing the bed linen flattens me, I have mysterious losses of energy unexpectedly, I struggle psychologically to accept I am “sick”. So many chronic illness patients have so much more to contend with than I do.

One member of the group, Sam, suffers spontaneous bone fractures. Can you image that? You are just sitting there, doing nothing, and your pelvis fractures. Or the bones in your feet. That patient cannot go and do what I do, it is just not physically possible for her. Does she look healthy in pictures? Sure – she looks stunningly healthy! Is she how she looks? No.

This overseas video is one that visually represents what I am trying to say.

A new hairdo, a manicure and great makeup can make us feel better, just as it can for a healthy person, yet many of us have a nagging thought in the back of our mind of how long can we manage it? For example, I am losing fine motor control in my hands. My manicured nails are one of my “pick-me-up” techniques.

nail polish

Yet it is taking me longer and longer to do them, trying to keep my hands steady. What will I do when I can’t do it any more? Pay to have it done? Maybe not – there are all those hidden, unrecognised costs of being sick, you see. One of the reasons I have a partial plate rather than dental implants is even healthy people have difficulty with manual dexterity as they age. Manual dexterity is important in caring for dental implants. With rheumatoid arthritis I wasn’t going to take the risk.

I’ve mentioned before the time a co-worker told me not to worry about the calories in a mini-muffin, I’d work it off in no time – ummmm – no, I can’t. Yes, I exercise, but I can’t do the level of exercise I LOOK as if I can do!

I asked two members of the support group if they would permit me to use photos of them looking absolutely stunning to illustrate this article. Both declined because the state of their health is not public knowledge – they are concerned about the impact being on a public website such as this may have on their jobs. One in particular is striving for remission and may be able to put all this behind her. I mention this to illustrate how society’s expectations can lead us to hide our conditions, keep it secret. Yet in doing so, we may exert ourselves more than we should and hamper our efforts to get well (or slow/halt disease progression), where that is possible.

Michele Lent Hirsch has written a book about being young, sick and female, “Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine,” which came out late last month.

The following is an extract from an interview with Hirsch:

MW: Right. In the book you talk about a job where your boss told you to “leave your cancer at the door.”

MLH: There couldn’t be really a worse reaction. And a lot of the women I’ve interviewed have talked about how they work, just like I did in that job, harder and longer hours just to compensate for what seems like people treating them like they’re not a worthy employee anymore.

And what’s especially horrible about that is, again, women are already getting paid less, getting treated more poorly at many workplaces across this country.

That kind of behavior is only going to enforce women trying to hold it all in.

Patients working longer hours, as Hirsch describes, to “prove” they can cope, are NOT going to be spending the time required to keep their bodies healthy and their conditions under control. They are going to be exhausting a body likely already energy depleted. Remember how I said I am one of the healthiest sick people? But I don’t work full-time, let alone work extra hours because I put my health first.

To my chronic illness readers, please share other phrases you find distressing in the comments. I especially invite men to share, as I don’t have much experience of being a man.

EDIT: A reader mentioned to me “Oh, but you’re fine now!” is something they describe as “That’s the killer”. I agree. No, we are not fine. Even if we are lucky enough to go into remission, we can never stop monitoring, never stop doing all the things that got us to that point without risking a relapse.

A friend of mine is this weekend taking part in a huge walk for Oxfam. Seven or eight years ago she could barely walk to the end of the street. With the right medical treatment her condition is now under control to the point, like me, she looks perfectly normal and does lots of perfectly normal things – like walk for Oxfam. But no, neither of us are “fine now”. We are forever vigilant and can never stop our self-care.

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 learning to work 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!