So, About the Safety Nets Thresholds

Introduction

Some years ago in Australia it was possible to claim a certain amount of out-of-pocket medical expenses on one’s tax return at the end of the year.

A few years ago, this changed. It was replaced with a system of higher rebates once a certain level of out-of-pocket expenses had been reached for the calendar year. This is beneficial, as the patients don’t have to wait for that money to be received once a year at tax time.

I have discerned some confusion about how this all works, so this article is an attempt to put “how it all works” in simple terms.

The one aspect I think is MOST important is registering as a family or couple, especially if you have a person in your family with a chronic or underlying condition. Watch out for that heading below!

Please note if you are reading this article after 2022, you may need to locate current links. The links given herein are current as at the time of writing, for 2022.

PBS and Medicare Thresholds

The Pharmaceutical Benefits Scheme (PBS) and Medicare Benefits Schedule (MBS) are managed differently and have different safety nets thresholds. It is important that both are understood.

Medicare is managed centrally and the details and your current status is easily accessed in your Medicare app if you have it installed on your phone or via MyGov/Medicare.

Pharmaceutical thresholds are tracked by your pharmacist, so if you get prescriptions from different pharmacies on a regular basis, you could be missing out.

Medicare Safety Nets Thresholds

The Medicare Safety Net Thresholds are set every year for the calendar year. Once you reach the threshold applicable to you, you get a higher rebate. What can this mean in dollars? Please note the below example is across two different years, so the rebates shown may have moved slightly. Also, different item numbers may attract the same consultation fee but have different rebates based on the item number. For example, a psychology consultation fee may also be charged at $210, but as it is a different item number than a GP consultation, the rebate will be different.

Given the above caveat, the below is sufficient for illustration purposes and the examples are actual transactions of mine.

StatusConsultation FeeRebateOut-of-pocket
Before I reach my threshold (from start 2022)210.0075.75134.25
After I reach my threshold (from end 2021)210.00183.0526.95

As you can see, after I reach my threshold, my out-of-pocket is reduced by $107.30 (for this consultation fee for this MBS item number).

https://www.servicesaustralia.gov.au/what-are-medicare-safety-nets-thresholds?context=22001

Note all of these refer to “out of hospital” services. If you receive a service in a private hospital as an inpatient, the out-of-pocket costs will not count towards reaching your threshold (although the graphic above doesn’t state that), nor will you receive the higher rebate for any services you receive as an inpatient. I know this from personal experience!

Remember imaging and pathology fall under this scope.

Verified & Unverified Costs

In most cases these days, you pay for a consultation at the time of the consultation and the practitioner’s staff submit your Medicare claim for you. In that case the cost is a verified cost. However, if this does not happen, be aware there will be extra steps.

Verified costs are when you pay your doctor’s fee before you make a claim from us. When this happens, your gap amount and out of pocket costs count towards your thresholds. 

Unverified costs are when you don’t pay your doctor’s fee before you claim from us. When this happens, your gap amount and out of pocket costs don’t count towards your thresholds.

https://www.servicesaustralia.gov.au/verified-and-unverified-costs?context=22001

Once you pay the doctor the balance and provide that receipt to Medicare, then the gap payment will be considered verified. Make sure you do that!

Registering as a Family or Couple

Why is this important? Let’s assume you are an Aged Pension couple. If you are not registered as a couple, you each, individually, have to reach that magic $717.90 out-of-pocket expenditure to receive the maximum increased rebates. That is, together you need to reach a total of $1,435.80 before you both get increased rebates. One of you may receive increased rebates before the other, if one of you has higher medical costs.

If you are registered as a couple, then you both contribute to a single threshold: $717.90.

Being on the same Medicare card does NOT mean you are registered as a couple or a family. I suspect this is a result of the transition from the old tax deduction method to the thresholds. You need to actually register.

If you’re part of a family or couple, you can register as a family to combine your costs. This means you’re more likely to reach the thresholds sooner. Even if all family members are on the same Medicare card, you’ll still need to register.

https://www.servicesaustralia.gov.au/how-to-register-for-medicare-safety-nets?context=22001

You can see if you are, perhaps, a family of five, especially if a family member has high medical costs, registering as a family for the Safety Net is a very sensible move. There is a BIG difference between reaching $2,249.80 per year for each of you, or for all of you combined.

Pharmaceutical Benefits Scheme Safety Net

Please note that the PBS Safety Net is a little more complex than the MBS. The thresholds for 2022 are $1,542.10 for General patients and $326.40 for Concessional patients. Note that if you have private scripts, these do not count towards the threshold. Private scripts are those where the patient doesn’t qualify for the Government Subsidy, but is still able to be prescribed the medication – this could, for example, be for “off-label” use. That link also has good “The Real Cost of Medicines” examples illustrating how it works.

The scheme requires pharmacists, on request by patients, to record the supply of PBS and RPBS items on prescription record forms. When a patient reaches the Safety Net threshold within a calendar year, they qualify to receive PBS or RPBS items at a cheaper price or free of charge for the rest of that year. Any applicable special patient contributions, brand premiums or therapeutic group premiums must still be met by the patient.

The Safety Net threshold is reached by accumulating eligible patient contributions for PBS prescriptions supplied through community pharmacies and private hospitals and for out-patient medication supplied by public hospitals.

Pharmaceutical benefits (including authority items) can only be counted towards the Safety Net threshold when prescribed and supplied according to PBS conditions. A medicine supplied by a pharmacist not approved to supply pharmaceutical benefits cannot count towards the Safety Net.

https://www.pbs.gov.au/info/healthpro/explanatory-notes/section1/Section_1_5_Explanatory_Notes

I strongly recommend if you or a family member has high medication costs, you ensure you are availing yourself of the benefits.

Summary

The confusion I have noticed among members of the general public is I suspect partly due to the transition from the tax deduction days. I don’t remember how well the “new system” was publicised at the time.

I recommend couples and families ensure they are registered because if someone suddenly does become unwell, the last thing anyone thinks of AT THAT TIME is registering with Medicare. With the risk of Long Covid currently, best to be prepared.

If you do have high pharmaceutical costs, please check with a pharmacist. I never hit the PBS Safety Net so I do not know nearly as much about how it works.

I Sat in My Car and I Cried

2021 was not a good year for me health-wise and it is time to come clean. In our chronic illness life, things don’t always go according to plan. Before I get into the details, I want to make VERY clear I do not in any way regret participating in the clinical trial I was on. It was wonderful, the people were wonderful, I was very well cared for. I am no longer on the trial, as you shall read, but that doesn’t mean the medication isn’t a great medication. I was just unfortunate. It happens. Hopefully I will have contributed to scientific knowledge in some small way.

So let’s get into it.

For whatever reason, during 2021 my medication stopped working for me. This could have been due to a variety of different reasons, we will never be able to prove the reason specifically for me so I am not going to discuss the various possibilities. It is not unknown: medications can just stop working for particular people. Of course, so much happened in my life DURING 2021, we did have a tendency to think I was flaring because of “stuff” happening. To just do a quick recap:

  • February: I suffered a fall, injured left ankle, right wrist (but saved my knee!!)
  • March: First Covid-19 vaccine (can cause flares in people like me)
  • April: Preparing for foot surgery (training work replacement etc, super busy)
  • May: Bi-lateral foot surgery followed by six weeks of inactivity
  • June: Second Covid-19 vaccine (can cause flares in people like me), plus I resigned from my old job
  • July: Started new job

So basically, lots of quite stressful events. That’s without considering the lockdowns which resulted in a lack of access to the gym and swimming and the various other concerns we all dealt with in 2021.

I did not want to accept that my medication wasn’t working (and that’s on me, it was my decision to persevere longer than I should have), for it had been wonderful. Best part was I did not suffer any side effects. However, at the end of 2021 it got to the point I had to accept the advice. A change of medication was needed. However, by now we were getting towards the holiday season and so appointment scheduling became an issue.

I’m leaving some detail out, but on New Year’s Day I almost took myself to an Emergency Department (ED). I didn’t for two reasons: A) If I went to my closest public hospital, I risked Covid-19 exposure, B) If I went to my local private hospital the ED fee would be money I really did not want to spend and I knew that in reality they’d likely manage the pain and tell me to call my rheumatologist on Tuesday. I could do that myself. So I soldiered on.

By January 4 it would have been easier to tell you what didn’t hurt, rather than what did. Even the entheses of my left hip were painful and THAT was scary as hips were one part of my body that had not previously been involved. What was painful?

  • Shoulders
  • Ankles
  • All Toes
  • Left hip
  • Elbows
  • Wrists
  • Most fingers
  • Hands
  • Knees (yes, even the operated knee felt swollen, but not painful, the right was painful)
  • Neck
  • TMJ (jaw joint)
  • Left Achilles Tendon
  • I also had some plantar fasciitis

That may not be a full list, but you get the picture. In the past, like when my shoulders had misbehaved earlier in 2021 (had ultrasound guided steroid shots in both shoulders), at least I could still walk, so I could still exercise, still move. Movement is not only my physical condition management strategy, it is also beneficial for my psychological health. Suddenly my lower body was so sore I couldn’t walk more than 500 metres. I couldn’t do upper body at the gym because my wrists wouldn’t allow me to lift dumbbells. I was struggling both physically and emotionally/psychologically.

I struggled to use a petrol pump. I couldn’t hold a coffee mug in one hand first thing in the morning. Turning taps off and on was painful. Getting dressed was a struggle. I needed a walking stick to get out of bed and move first thing in the morning. I could go on.

On January 9 I took myself to the hydrotherapy pool. It was a struggle to get into my bathers as my hands, wrists and shoulders were hurting. But I managed. Packed my hydrotherapy gear. Drove to the swim centre.

It was closed for repairs.

I walked back out to my car, sat in my car and cried. It seemed there was NOTHING I could do, not even hydrotherapy.

Of course, I’d been in touch with my medical team and January 11 I was officially taken off the old medication. I also took the rest of the week off work. Taking the rest of the week off work filled me with guilt. I love my job and when I’d accepted the offer I believed my psoriatic arthritis was under control. I didn’t feel fantastic at the time, BUT I was still only seven weeks post the foot surgery, so at the time it was thought the body seeing surgery as an injury was the cause of my flare state and I’d go back to my normal. So I was horrified to be taking time off.

I mention this for newbies to the chronic life and friends, family or colleagues trying to understand and be supportive. We, the patient, can feel guilty about stuff we have absolutely no control over. I can’t predict the future, yet I felt responsible for the fact I couldn’t have predicted the future! So then not only do we feel unwell, we feel guilty on top of it. Not a good place to be.

Bottom line, I’m on a new medication. This is my sixth medication since the start of 2015. So six medications in seven years. Many medications for many conditions, including mine, do not work overnight. Some take six to twelve weeks to “kick in”. In the meantime the patient takes a bridging medication to hopefully control symptoms at a manageable level, such as in my case Prednisolone. We taper OFF the Prednisolone as the new medication (hopefully) ramps up. I’d just ALMOST tapered off my last Prednisolone series, now I’m back on. So the patient doesn’t necessarily know for several weeks if the new medication is going to work for them. Will there be side effects? How much weight will be gained on the Prednisolone?

It can be natural for people to think along the lines of, “Well, OK, you are on a medication now, shouldn’t you be feeling better?”. No, it can take a while.

Many of these conditions are resolutely unpredictable, and THAT alone can be hard for friends, family and colleagues to understand. I get that – it is hard for ME as the patient to understand. I’m sure it is hard for the medical professionals to manage too. No crystal balls in this business. I wish there were. My rheumatologist painted me this lovely future scientific state where we will be able to personalise treatments, but we are not there yet – and probably won’t be in my lifetime. I also suspect such treatments may be rather expensive, but that is a WHOLE other discussion!

Today I actually managed to walk two walks totalling just over two kilometres. My left ankle is complaining a bit, but my right is OK. It is the furthest I’ve walked for weeks. I was back at work today. I’m on the improve.

All I can hope is the improvements continue. Pace UP again almost from scratch, don’t overdo stuff.

So if you or someone you know is struggling through a setback – please know you are not alone. It sucks. All I can say is keep persevering.

In closing, I would like to thank my manager and colleagues for their wonderful support. I am so grateful.

Hope for the Best, Plan for the Rest

While the Covid-19 variant Omicron may be clinically “mild” for many people (and the jury is still out on that), for some of the population it may not be. Many of us with chronic conditions may have conditions that make catching Covid-19, any variant, a riskier proposition for us. Talk to your general practitioner about your condition/(s) and your risks.

While Covid-19 is not the only driver for any of us to consider our legal documentation – it is particularly pertinent at this time and has certainly prompted me to get my affairs in order.

I am not a lawyer or a doctor: I am a rather experienced chronic illness patient. I am conversant with my risk profile. On that basis the last thing I want to do is leave my family with a medico/legal battle should I end up in difficulty. I want to make things as easy as I possibly can for those left to finalise my affairs.

While we don’t like to think of such things it is important to consider and prepare legal documents ahead of time. The links I am providing in this article relate to Victoria, Australia, however you will find similar in your location.

The details in this article are neither exhaustive nor comprehensive. This aim of this article is to list the documents that it may be appropriate to consider and information links.

Advanced Care Plan/Directive

This you organise with your doctor although lawyers will draft a document for you. Details can be found at advancecareplanning.org.au. Note there are differences between states. This is a document wherein you can detail your wishes about treatment under a range of possible medical or surgical situations.

Appointment of a Medical Decision Maker

Details of appointing a Medical Decision Maker can be found on the website of the Office of the Public Advocate. This can be in place of a Medical Power of Attorney.

You have the right to make your own medical treatment decisions.

However, if you experience an injury or illness that means you are unable to make decisions, either temporarily or permanently, If this happens to you, Victoria’s Medical Treatment Planning and Decisions Act 2016 specifies who has legal authority to make medical treatment decisions for you. This person is called your medical treatment decision maker.

You can choose your medical treatment decision maker by appointing someone to this role, providing you have decision-making capacity to do so.

https://www.publicadvocate.vic.gov.au/your-rights/your-healthcare/appointing-a-medical-treatment-decision-maker

Enduring Powers of Attorney for Financial, Medical Treatment & Personal Decisions

Details about Enduring Powers of Attorney can also be found on the Office of the Public Advocate.

These ensure that someone you trust can make decisions for you if and when you are unable to make decisions. Given the current studies around cognitive deficits and brain damage in Covid-19 patients, death is not the only concern.

Cognitive deficits in people who have recovered from COVID-19 is an article published by The Lancet.

The Mayo Clinic advises:

Although COVID-19 is seen as a disease that primarily affects the lungs, it can also damage many other organs, including the heart, kidneys and the brain. Organ damage may lead to health complications that linger after COVID-19 illness. 

https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/coronavirus-long-term-effects/art-20490351

Voluntary Assisted Dying (Victoria)

Under current legislation in Victoria your appointed medical decision maker cannot request VAD on your behalf. The Victorian Government has a website detailing the legislation, Voluntary Assisted Dying. Note that this CANNOT be prepared in advance of any requirement. The criteria are very strict under the current legislation. I include it here only to highlight this is not something that can be prepared in advance, nor can you instruct your medical decision maker to request it, as that is not permitted.

Only you can start a discussion with your doctor or health practitioner about voluntary assisted dying. Your doctor or health practitioner cannot start the discussion. Your family member or friend can be with you when you ask about voluntary assisted dying, but they cannot ask for you. This helps to make sure your decision to seek voluntary assisted dying is voluntary.

https://www.health.vic.gov.au/patient-care/do-i-meet-the-conditions-for-voluntary-assisted-dying

Last Will & Testament

There are many available links. I have chosen the Australian Seniors Understanding a Last Will & Testament in Layman’s Terms as a the resource I am providing.

As many people remarry, please note the following:

Marrying (or remarrying) automatically cancels your Will, unless your Will clearly shows you were planning this marriage when you made it.

https://www.legalaid.vic.gov.au/find-legal-answers/wills-and-estates/changing-will

I mention that specifically because I had that exact discussion with friends of mine recently who actually couldn’t remember when they had made their last wills. Dying intestate is not a financially sensible option as there are fees for the state to administer the estate.

If someone dies without a will, they die intestate. Being intestate means that the laws of the state or territory they live in will decide how their estate is administered. An estate is made up of a person’s assets and liabilities.

https://www.statetrustees.com.au/executor-services/learn-more-about-executor-services/what-happens-if-someone-dies-without-a-will?gclid=Cj0KCQiA5aWOBhDMARIsAIXLlkcSG2I6utkyILW0VXnAdvm9SddjCIGePIRVIdnyUOT8-ltbXsxSJdQaArewEALw_wcB

Superannuation & Life Insurance

Superannuation and life insurance do not automatically form part of your estate. Superannuation particularly often requires a Binding Nomination form be submitted to the superannuation company and updated every three years (annoyingly).

I strongly suggest your check your specific situation with your life insurance and superannuation companies. The following is the HESTA website as an example.

It’s not the happiest subject – but it’s super important…who will get your super when you die? To be more certain it will go to the people you want, you can sign a binding death benefit nomination.

https://www.hesta.com.au/members/your-superannuation/accessing-your-super/binding-death-benefit-nominations

Take care, stay safe.

I’m Not Lazy

Neither are YOU lazy. The title above is stolen, with permission, from a social media contact’s tweet.

We’re not lazy, nor are we responsible for other people’s expectations of what THEY think we should or shouldn’t be able to do. Sidenote: often those expectations are based on our appearance. Refer to You Look So Healthy! for more on that.

There are four other articles you may like to browse as background material to this article:

One of the challenges we face is helping people understand the whole energy availability thing many of us struggle with. In the conversation related to the above tweet, J told me she had mowed the lawns, done the edging, walked the dog and cooked dinner. J has the same disease I do, psoriatic arthritis (PsA). While I don’t know or understand the specific expressions of many other chronic conditions, this is one I do understand. J couldn’t see me, but if she could have, my eyes nearly popped out of their sockets.

Other conditions can be very similar, but I will stick with the disease I know for illustrative purposes today.

On a great note, for PsA management, J had certainly been moving. Movement is Medicine! However, J had probably used up more spoons or internal battery than she had available. All that in one day would cost her later, as she well knows from experience.

Society conditions us, well before we get sick, as we are growing up: doing our share, work ethic, earn our way. We then place expectations on ourselves. We don’t want to be sick, we don’t want to let others down by not doing our bit. In the first few years, of course, in the back of our minds we think it is temporary. To understand a bit more on that, you may like to read Will Society Adapt? When? How? Even we ourselves have to adapt to our new normal.

PsA is a very odd disease. At its worst for me, I can wake up in the morning with painful feet, ankles, knees, wrists, fingers; maybe even throw shoulders and neck in on a particularly bad day. I may have to use crutches to get around first thing in the morning. I’ll be unable to turn a tap on. Can’t lift the electric jug, struggle to open the coffee jar. Put on a bra? Are you kidding? Pull on tracksuit pants? Yeah, right. That sort of thing. About 11:30 am I’ll be fine. Virtually pain free. My body will have de-solidified. I’ll head out for a walk, go to the gym and do a weight training session. Sadly 160 kg leg presses aren’t happening any more, but maybe again one day…….. I am a completely different physical specimen at 4 pm than I am at 7 am. I saw my Plan B GP on Tuesday (Plan A was away), who hadn’t seen me for probably a year. She said “You look great!” This was 6:30 pm. I said to her, “You didn’t see me at 7 am!”

This can be VERY difficult for our friends, colleagues and family to understand. You need rest but you also need to go to the gym? That doesn’t make sense! Actually it does make sense and the reasons why are discussed in more detail in the above linked articles, so I won’t repeat myself.

We know, we can see it in their eyes. The doubt. The lack of comprehension of the situation.

We know people think we are just being lazy (at best) or hypochondriacs (at worst). J is right, it is VERY exhausting to be constantly explaining it to people, yet we know if we don’t explain it, if we don’t share the knowledge, social understanding and acceptance will never happen. We use analogies: spoons, internal batteries, even daisy petals. Over time our nearest and dearest do start to understand. If they want to.

If we live by the rules of pacing our activities and energy consumption, many of us can achieve a fantastic very nice quality of life, given our disease. The problem is, to OTHER people our rules can make us look lazy in their eyes – or at least that is how we can feel.

I work six hours a day. I have just entered my eighth year of having PsA, so I’ve had time and practice to build my personal pacing skills. Even so, I still feel guilty some days that I’m not “doing my fair share” at work. I have to lecture myself along the lines of this is what I MUST do or I won’t be able to work at all. I did try full-time for a while in 2019/2020 – it was WAY too much. Recently, we had a systems issue at work. That day I worked ten hours – I was petrified I was going to crash before we solved the problem. Thankfully, I didn’t, but those feelings and fears are what we live with every day. We don’t need to feel others are judging us because we MUST do less than they do in order to regain and retain quality of life and independence.

No, we do not have to vacuum the whole house in one day. A room a day would do!

No, we do not have to mow the whole lawn in one day. J, are you listening?

Spreading out those sort of tasks DOES NOT mean we are lazy. It means we are protecting our bodies, our internal battery and our quality of life.

Today I was going to go grocery shopping. But today is also weight training day. The grocery shopping can wait until tomorrow. Both on the same day would mean I wouldn’t be able to do what I have planned for tomorrow. Grocery shopping will fit with my plans for tomorrow as the overall intensity tomorrow is less.

We are not lazy. I am not lazy. Don’t let yourself be guilted into doing things that break your pacing rules, whatever they may be for you. The goal is to balance activity and energy so you achieve consistency in your state of health.

Flaring

For the uninitiated, flares are what we chronic condition people call the times our condition (or conditions) decides to remind us it exists, usually in no uncertain terms.

Barb, who, like me, is a complex comorbid patient including psoriatic arthritis, sums up flares succinctly!

The unjoys! The phrase “Oh the joys!” is in common usage, the implication being something is not actually so joyful. But I love this new word. For me, it hits a home run.

I had one yesterday. While the experience is fresh in my mind, I’m writing about it. We tend to get used to them, they become just part of our new way of life, while healthy people can find the flares of others confronting.

If you are friend, family or colleague of a chronic condition person, or you are new to this chronic world, hopefully I provide some insight to “what happens”. Everyone is different, what I describe is specific to me, my conditions and my current circumstances, but should give readers a feel for flares generally. Flares can be long or short: once my right wrist flared for about eight hours, then was fine. No rhyme nor reason.

Yesterday’s flare was different. For a start, it was whole body, not just one joint.

I now realise it started on Wednesday. I was driving to the office and my upper arms were sore when dressing and driving. Sore upper arms usually means shoulder inflammation. Nothing too bad, but I did take panadol osteo to see me through the day. Driving home from the office that night I felt nauseous and sleepy and nearly drove through a red light. Not good.

Thursday was a little worse, more areas were sore. I was WFH that day, so I managed. Even my total knee replacement scar felt tight, stretched and tingly. This was a new thing. The joints at the base of my thumbs were sore. My right (unoperated) knee was painful. My right hip was grumpy. You don’t need the whole list!

I woke up Friday morning in a full flare. Not only did I have many sore bits, I had no energy. I had to work, because…. deadlines. At least I was working from home though. No meetings scheduled. I certainly would not have gone into the office, but I felt I could manage the most important tasks in solitude at home. I resorted to panadol osteo and a stronger pain med to get me through the day – I hoped.

Yesterday is the first time ever I have worked in my dressing gown. I am the sort that puts on the lippy and mascara every day, working from home or not. For me to not even get out of my dressing gown is an indication of how crap I was feeling. Healthy people reading this may be horrified at this admission – chronic people will be nodding their heads and thinking, “Oh, yes, know that feeling well.” I did 1,172 steps for the day, between my office and my kitchen mostly.

It is very hard to explain how awful it actually feels. I liken it to possibly feeling as if you have run a marathon – at least that is how I envisage a marathon runner may feel at the finish line. It is only the start of the day, but you feel done already. Like, literally, DONE! That’s before any pain is taken into account. Or maybe the old “run over by a truck” phrase is applicable.

I did manage to get through the work day, almost – I finished slightly early. I doubt my productivity was any way close to normal, but I got some important deadlines met. I will probably work a few hours this weekend to catch up on other tasks. If at all possible DO NOT DO THIS! If you are flaring, REST. I’m setting a bad example here, I know that – but my example also underlines the fact sometimes we are caught between the devil and the deep blue sea.

After I finished work I sat in an armchair and my lumber spine decided to be excruciating. It had, I’ll admit, been building as the day wore on, now it was awful. No idea why – my lumbar spine hasn’t been a problem since 2017 (except for changing the bed linen, that irritates it). Pain medication was required, most definitely. Then, I got stomach pains. My eyes were dry and irritable. Like, what next?

This morning I woke up feeling absolutely fine! Made myself a lovely cinnamon rolled oats and pink lady apple breakfast, have been for a 1.6 kilometre walk, had a coffee at my local café. After lunch I went to the gym for a strength training session. The only slightly sore bits are the joint at the base of my right little finger and only if I hyperextend it, plus my soon-to-be-operated on toes are a bit off (but that’s understandable). I have energy, I feel perfectly fine.

The flare is over, just like that. Gone.

What causes flares when we are on a stable medication that is working and we are doing all the right things (eating properly and sleeping, hydrating, exercise)?

I will never forget my rheumatologist saying to me in late 2014, “Get the stress out of your life.” Great advice, but easier said than done. While the evidence is pretty conclusive that stress exacerbates many conditions and causes flares, we still have to live life! Earn money to pay the bills.

If I stand back and look at what has been happening in my life during the last few weeks there are several factors that alone may not be a problem, but the culmination of the stress of each has resulted in this flare. If you are flaring more than usual, take a look at everything that is going on in your life in the time period preceding the flare. In my case, right at the moment:

  • Pending surgery, with a late change of surgeon
  • Late change of the actual surgery procedure (extra stuff)
  • Teaching a relief staff member to do my role while still doing my role
  • Usual work deadlines
  • Fitting extra pre-op tests into my schedule
  • Mountain of pre-op paperwork
  • Lack of exercise due to work hours and therefore internal battery depletion
  • 42 minute phone call to Medicare – even things like that add to the stress load
  • I’d let my dietary protein drop while distracted with the above concerns

There is stress related to each of the above. Any one item alone is probably not an issue: add them all up and the body goes “What are you doing to me????”

Realistically we can’t avoid these life stressors. We can’t necessarily spread them out over time to minimise the impact on us, sometimes they just all come together. I haven’t really flared for years. You might ask what about the knee surgery, did I flare then? No, but the list was smaller then. No late change of surgeon, no late change of proposed procedure, I wasn’t working at the time so no work-related pressures. I was getting exercise. Sure, I was unemployed and THAT alone is hugely stressful, but I was able to mentally put that on the top shelf out of sight while I concentrated on the knee. I knew the knee rectification was important in order to be able to get a job – I prioritised.

There is no way I could have avoided the culmination of the above stressors, it is just the way life has played out over the last week. I saw the new surgeon on Thursday, had to digest his unexpected news about what needed to be done, fit in an MRI on the Saturday, phone consult and decision on Tuesday, flare started Wednesday, Friday full conflagration.

Surprised I feel so fantastic today after feeling SO bad yesterday. It really is like getting into a brand new car: today I am driving a brand new car! Yet that is what flares can be like and why it can be hard for healthy people to understand or, worst still, easy for assumptions to be made about “it is all in your mind”. No, it isn’t: it is what happens physically.

If you are friend, family or colleague of a chronic person, including healthy looking chronic people, please be compassionate. Be supportive. We don’t like these flares, we don’t have them to inconvenience others!

If you are a chronic condition person, please share any advice or your experiences in the comments.

We Need Personalised Numbers!

2,000 calories. 10,000 steps. These numbers float around and almost become related: subconsciously there can be a belief that if we do 10,000 steps a day we’ll be fine eating 2,000 calories a day! Will we?

2,000 calories a day is as much a myth as is the 10,000 steps a day. While there is always the caveat that the 2,000 is an average recommendation for the average person, etc etc, it is the 2,000 number that sticks in people’s minds.

Based on these rather wide, and self-reported, ranges, some pretty loose rounding happened, and the number 2,000 was settled on for a standard. In other words, not only was the calorie standard not derived based on prevalent scientific equations that estimate energy needs based on age, height, weight and physical activity levels, but the levels were not even validated to ensure that the self-reported ranges were actually accurate.

US News
From Samsung Health app

The 10,000 steps originally came from a marketing campaign.

The magic number “10,000” dates back to a marketing campaign conducted shortly before the start of the 1964 Tokyo Olympic Games. A company began selling a pedometer called the Manpo-kei: “man” meaning 10,000, “po” meaning steps and “kei” meaning meter. It was hugely successful and the number seems to have stuck.

BBC .
Garmin Connect app

Readers who know me on social media know I am very big on getting my movement every day. This website originated from my personal dedication to Movement IS Medicine. So am I against pedometers? Not at all, I highly recommend pedometers. Just forget about the 10,000 steps a day.

Let’s look at each of these aspects of our lives separately. First, the calorie conundrum.

2,000 Calories?

My favourite illustration is the car fuel tank versus the human body. My car’s fuel tank capacity is 60 litres. No matter how hard I try, I can’t put more than 60 litres of petrol in that tank. My body? Ohhhh, I can consume as much fuel as I like. I would just keep expanding to store it all!

I have several factors at play:

  • I’m over 65 – age reduces our basal metabolic rate
  • I’m short
  • I have a chronic condition which limits my fuel burn
  • I’m on medications – medications can affect metabolism.

It would take me an hour of weight lifting in the gym on top of my three walks a day and 7,500 total steps to burn slightly over 2,000 calories a day. My usual burn would be 1,800 on a good activity day. On that basis, if I consumed 2,000 calories a day I’d be storing 200 calories a day. A rule of thumb is one kilogram of fat on the body is 7,000 calories, so I’ll let you do the maths on that. Yes, I lift weights and I walk, but not at the intensity required to be building too much lean muscle with that extra 200 calories a day!

In the image above from my Samsung Health app 1,352 calories a day is recommended for me given my age, weight, height and gender. It doesn’t know about my medical conditions or my medications – if it did, it might recommend less! That is 648 calories less that the 2,000 number that gets thrown around with abandon.

My nutritionist recommended 1,400 a day for me, just for comparison.

Everyone is different and we need to tailor our intake for our particular circumstances and output (burn). We also need to be very careful about what we eat as we have less calories to “fit in” the needed nutrients. For example, I aim for 1.5 grams of protein per kilo of body weight per day. The extra protein chews into my calorie allowance.

Those of us with chronic conditions that have a boom/bust aspect do not have the luxury of “burning it off tomorrow” either. We can’t “do extra” or we end up with a flat battery. It is all interwoven.

10,000 Steps?

I aim for 7,500 personally, at this time. A pedometer is a good way of measuring how much we are moving. It is not the number itself that is critical, it is the consistency. Not moving leads to de-conditioning which is not what we want as it has negative impacts on our bodies.

de-conditioning

A pedometer is also useful when it comes to calculating our pacing up. It is an indication of what we have done and therefore helps us calculate what our 10% increase target is. It doesn’t matter if the number is 2,000, 3,000 or 8,000. It is the relatively and consistency that matters.

I talk about steps as part of my movement regime because it is what I and many other people use. There are, of course, also many chronic condition patients who use other movement modalities. The underlying premise remains the same.

Tracking and Recording

I track and record because let’s face it, even healthy people forget they had a muffin at morning tea. Add cognitive impairment on top of that and it is easy to forget what we ate during the day. I’d be hopeless if I didn’t keep track. With only 1,400 calories to play with, I need to make sure I don’t accidentally eat 2,000!

The same with activity/movement. It is easy to think we moved more than we have and over time we find we’ve paced down unintentionally instead of UP. Our pain levels may increase as a result of less movement and more weight. Not what we want at all.

Personalised numbers are needed. Know our BMR, know our limits, work out our personal parameters and targets based on our individual circumstances and bodies: age, gender, height, weight, medications, conditions.

Personal Energy Use

Early in my chronic illness life, I wrote an introductory article, Pacing for Beginners. More recently, I wrote about Pacing THRU, Pacing UP, Pacing DOWN.

Pacing, balancing my life, has become even more critical since starting a full-time job. The earlier articles talk about the spoon theory and the battery analogy. Today I’m going to stick with the battery analogy as we all understand what happens when our mobile phone battery dies. That’s it. The screen is dead. You can’t make a call. The only option you have is to recharge the battery.

I find energy difficult to write about. I can’t quantify it like I can quantify calories or steps or weights. Energy seems elusive, hard to pin down. Even though I am using the battery analogy, I don’t have a charge meter on my arm. I can’t tell how much battery I have left at any given point in time. So if it seems like I’m pondering as I write, it is because I am pondering as I write.

Many of us with chronic conditions are a bit like a mobile phone. The battery has a limited capacity. I’ve written about fatigue/lethargy before too, in When was the Last Time You Yawned? Working full-time hours again, I have had to revisit my condition management plan to ensure I avoid the dreaded Boom/Bust Cycle. So far, I’ve managed, although my weight training has taken a bit of a back step, sadly.

The difference between me and my phone is if my phone goes flat, I can plug it into power, turn it on and make a call. If my battery goes flat, that is it. Coffee is not going to help. A sugar hit is not going to help. In fact, either might make the situation worse. Imagine if that phone battery could actually go negative and had to be charged back up to zero before use, even when connected to power. THAT is how we can be (not how we can feel, how we can BE) if we are not careful, if we break the rules.

While I was working part-time, I had everything worked out beautifully for me. I got the exercise I needed, the sleep I needed, I did my job well. I never let myself get a flat battery.

While I was not working in the early part of 2020 my plan was to pace up my exercise to build physical resilience in readiness for a new job. With the success of my new treatment, I could do this. There were some interruptions! A knee put me in hospital, then Covid-19 lockdowns followed by a total knee replacement meant things were a bit stop-start, but I was way ahead of where I had been at, say, the end of 2016.

Working full-time has changed how I can arrange my time and also shone a light on the fact the boom/bust cycle is still very much a risk. There have been times at the end of the work day where I quite simply feel my brain shut down. It goes from 90 miles an hour to a dead stop. Nothing I can do about it. The battery is dead. It isn’t just about physical activity, this battery also runs our brain.

It is challenging for people who have no prior experience of these sorts of conditions to understand what happens. After all, many of us, myself included, LOOK fine! It took my daughter some time to come to grips with it, but she now asks “Do you have enough spoons, Mum?” when suggesting something.

I’ve become better at declining social invitations – no, not on an evening before a work day, or no, not two events on one day.

Every activity we do uses battery power. Showering, drying our hair, driving, working, exercising, cooking. In my experience some things use more battery power depending on the time of day: driving is a classic example. Driving for one hour in the morning is not nearly as tiring as driving for one hour in the evening after a day at work. It is almost as if once the battery gets low, it depletes faster. We have to be aware of all these things. I don’t want to cause a fatal car accident because I lose concentration because I haven’t paid heed to my battery level. Look at the pace column of my walks in the image above. the first walk of the day is the fastest, the last is the slowest. This is a constant pattern.

Early in my journey, I would have been unable to do a weight training session and grocery shopping on the same day. That would have used way too much of my battery. Even now, I shower in the evenings. Why? Because I can do it at a slower pace in the evenings and I am not using up vital battery life I need for the work day.

A good night’s sleep should recharge us, you say? We wish that were true. In many cases it is true – unless we have drained too much – then we end up in that negative charge scenario. Not good. However, disrupted sleep is often a symptom experienced by those with chronic conditions. Imagine trying to charge your flat phone, but the charger plug keeps falling out of the phone overnight. In the morning your phone battery is still at only 50%. That can be us.

Strength can fluctuate as well. I happily did 32 kilogram chest press sets one day with every intention of increasing next visit. Next visit I struggled with 25 kilograms. Why? No idea. By no idea, I mean no rational “healthy” explanation. Just that day my body said, “No, not today”.

Endurance is linked to our battery too. Some days I can walk two kilometres easily in one walk – other days I have to stick to three separate one kilometre walks. I’ll feel exactly the same at the start of any walk – then sometimes the body just says, “No, not today”. Part of this is linked to my not having the time available at the moment to consistently Pace UP. Between work and weather I have been limited to grabbing my walks in a somewhat patchy manner which breaks all the rules of pacing. Consistency is key. I’m not getting consistency. I suspect similar applies to the weights.

It is very hard to explain to people what this whole energy thing is like. How we constantly have to be aware of how much battery we’ve used. Healthy people would not, for example, think of having a shower as using energy, or should I say using any great amount of energy. I can assure you, many of the chronic illness community will attest to having to rest after a shower.

In my last article I raved, quite rightly, about the medication I am on. I also stated it hadn’t completely solved the energy/lethargy/fatigue aspect, or the “brain fog”. Despite my writing about energy today, these aspects are still much improved from where I was three years ago. To give some sense of measurement, three years ago I was working 24 hours a week and Saturday morning would always be a recovery morning – I’d do nothing until at least noon. Now I am working 38 or more hours a week and I’m actively doing something by 10 am on Saturdays. I might be at the gym, grocery shopping, doing laundry: I’m active. So a major improvement. And some quantification, which makes me happy!

However, I’ve had to cut my second weight session a week because the energy required to drive to the gym, do weights, drive back and then shower is more than I can manage at the end of a work day. I rarely write any more because usually by the end of the work day my brain has said, “No, not today”. I started this article on December 31, it is now January 16 and I still feel this is very scrappy writing. On the other hand it is a very scrappy topic: as I said I can’t quantify it very well. My thoughts about it come and go: after all, we learn, over time, to live with it. It becomes our new normal. At the same time we recognise that our healthy friends, family and co-workers can be baffled by something they have no experience of and it is not visible.

When I wake up in the morning, assuming I haven’t overdone it the day before, I feel perfectly “normal” just as I did before I became a chronic condition patient. The main difference is at the end of the day I will NOT feel as I did at the end of a day back then. Furthermore, depending how much “charge” I use during the day, I could hit that flat battery state earlier in the day. Other patients will not be as fortunate as I am, I am aware of that. So readers, just because I say I can do something, DO NOT, please do not, assume your mother, father, sibling, friend or co-worker can. They may be “better” or “worse” that I. I am simply n=1 – I’m not a study, I’m just one example trying to explain what it can be like!

As I write, at the beginning of 2021, I am very concerned for the long haul Covid-19 patients, many of whom cite fatigue as an ongoing issue. While the studies of this phenomenon may shed scientific light on ME/CFS, we will also have more chronic patients. My thoughts on society and chronic conditions are expressed in Society and Chronic Health Conditions. As communities, we have challenges ahead.

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: