Inaugural ACHD Education Day

Saturday 21 February 2015 marked the Inaugural ACHD Education Day. The event was run by HeartKids and held at the Mercure Hotel in Sydney.

Considering it was the first ever event of it's kind, the day included a good mix of content and professionals as speakers, including:

1. Professor David S Celermajer AO FAA (Cardiologist at RPAH; Head of Cardiology at University of Sydney; and Clinical Director of the Heart Research Institute)
2. Associate Professor Edwin Kirk (Clinical Geneticist)
3. Dr David Tanous (Cardiologist at Westmead Hospital)
4. Dr Rachael Cordina (Staff Specialist in Cardiology at RPAH)
5. Adjunct Associate Professor Amanda Gordon (Clinical and Health Psychologist)

Image courtesy Uni of Sydney

Professor David Celermajer was clearly the draw card for the day and (not surprisingly) it became quickly evident how knowledgeable and well respected he is in his field, as well as what a huge advocate he is of adult congenital heart disease. His expertise in the field of ACHD has not been an easy or short feat - it has taken him 16 years to fully qualify; illustrating his dedication and passion for his life's work.

He began by going through some startling statistics and facts, which I've summarised below.

During the 1970's and 1980's, it was mainly just children with congenital heart disease. There are now more adults with congenital heart disease than children. In the 1970's only simpler heart problems could be fixed whereas now, almost anything can be treated. This means a much higher survival rate and therefore adult population with CHD.

NSW has approximately 10,000 cases of adults with CHD.

• Only 2,500-3,000 of these cases are seeking or have sought care in an expert ACHD centre.
• There are 500-600 new cases of CHD which join the adults annually, increasing in number and complexity.

In Australia there are 55 cardiologists specialising in children with congenital heart disease vs. only seven cardiologists specialising in adults with congenital heart disease. I found this fact astounding, which further confirmed why I had such trouble finding a specialist cardiologist for my personal care. Not only are there not many ACHD specialists in Australia, in my view (and this may now be changing), there also seems to be little awareness by generalist cardiologists of the ACHD specialists that do exist.

The ACHD population is expected to grow 5% p.a. Translating to one in 150 people having some form of congenital hear disease, or 6-7 per 1,000 live births (including congenital problems which appear later in life).

Professor Celermajer also explained different heart conditions, which was really interesting. These were by no means definitive, but clearly outlined how every CHD case is complicated and so very unique.

Apart from caring for his patients, university and Heart Research Institute commitments, Professor Celermajer has also dedicated (it seems a vast amount of) time to establishing comprehensive adult congenital heart disease centres, which I've now listed on my blog. Furthermore he's been working intimately with the Cardiac Society of Australia and New Zealand to develop a paper outlining recommendations for the standards of care for adults with CHD. This is a massive piece of work and it's required due to the massive struggle that exists with transition of care from children to adults, which is something I can relate to. The main points outlined in this paper are:

1. ACHD is a relatively new and rapidly growing area of need.
2. The recommended (adequate) standards of care.
3.  Whole life planning (holistic care).
4. Paediatric patients transitioning to specialist care centres for adults when they come of age.

He had opened his speech by stating what a burden it is living with ACHD. With those words I felt a massive relief to know that someone else really understands, through his experience and exposure to ACHD, what I and everyone else there present in that room, go through on a daily basis. He came full circle and closed his talk by outlining some of the psychosocial aspects affecting patients with ACHD, which are highly important as they apply to our day to day living:

• exercise
• employment
• insurance
• intellectual and social development
• contraception and family planning.

As CHD patients there isn't much we can do about our physical limitations, but we do have to make daily decisions about other factors in our life and have to always take into consideration how these affect our CHD. All the technical and academic aspects aside, what really stood out for me was the empathy Professor Celermajer feels for patients with ACHD. It is comforting to know there are people out there that understand and that we have the established ACHD specialist centres where adults living with CHD can get tailored care and assistance for all areas in their life.

Associate Professor Edwin Kirk spoke about his area of specialty: genetics. He's been interested in genetics associated with congenital heart disease for over 15 years. Most of the information went over my head and there were a lot of charts used as visual aids, so difficult to transcribe. Basically what I took out from that presentation is that genetics is such a wide area of study and so complicated, that, to simplify, there's not much that they actually do know. CHD is due to multifactorial (meaning many factors) inheritance. They think it's approximately 70% genetics and 30% environmental. 1% of babies born have a chance of having some form of CHD.

What I understood from this information is that unless there is a clear pattern of heart disease in your family tree, then the reason you have it is most likely random, pure and simple luck.

Image courtesy zoominfo

Dr David Tanous specialises in CHD and pregnancy, having completed a fellowship in congenital heart disease and heart disease in pregnancy at the University of Toronto. He too had some interesting facts to share.

• The female body works extremely hard during pregnancy, there's a 50% increase in fluid volume, 30-50% increase in cardiac output and 30% increase in heart rate. It's between 28-30 weeks where the cardiac output peaks. These factors can have a massive impact on someone healthy, let alone a woman with heart disease.
• The risk of transmission of heart disease to offspring is 3-5%.
• Caesarian-section is not proven to be a better delivery method when it concerns the load on the heart. 
• There is added complexity when anesthetics are thrown in the mix. 
• Certain medications can impact a fetus adversely.

Therefore a good assessment before pregnancy is far more important, with preconception planning preferable. There needs to be a team approach to ensure that all the factors mentioned above (and more) are taken into account, including but not limited to:

1. Cardiologist
2. Obstetrician
3. Anesthetist
4. GP

Some useful resources Dr Tanous shared are listed below.

Mothersafe - NSW Government service assisting patients and their healthcare providers with concerns around exposures during pregnancy and breastfeeding

Heart Disease and Pregnancy - resource for patients and healthcare professionals outlining the risks and management strategies associated with pregnancy for women with heart disease.

Image courtesy HRI

Dr Rachael Cordina is the newest addition to the RPAH team and her passion lies in ACHD and exercise.

Patients with ACHD are automatically at an increased risk of being overweight and inactive. This can be due to many reasons such as being wrapped in cotton wool from early in life, or physical limitations or symptoms which make it difficult to exercise.

The good news is, habitual exercise has been shown to have a greater impact on fitness and exercise capacity than the heart muscle function itself. A tiny bit of exercise is better than no exercise at all, for example a slow walk for 10 minutes per day.

• The recommendation is that people with CHD should complete an exercise test to determine their peak heart rate, as there is no clear cut formula.
• Some sporting activities can be fatal to people with certain heart conditions. Always speak to your cardiologist to obtain approval for undertaking any exercise program or physical activity. 
• Even people with complex heart issues can exercise, but this needs to be done in a supervised environment under specialist care (exercise physiologist) with a tailored program.
• People with defibrillators and pacemakers should avoid contact sports and long distance swimming.
• Everybody with CHD can benefit from regular exercise.

Exercise and CHD is an area I too am very passionate about. Prior to my pregnancy and post my cardiac arrest, regular exercise helped me not only physically, but also mentally. I feel like it's one of the few positive things I can do to help my condition. In most cases it won't cure your condition, but it is a great preventative measure to help keep other problems or complications at bay. After my cardiac arrest I had a major realisation: just because I have CHD, does not mean I am exempt from other health issues. I don't see the point in exposing myself to greater risk of anxiety, cholesterol, diabetes, obesity, heart attack, or osteoporosis. So the only thing I can do is minimise these risks by exercising.

Image courtesy Armchair Psychology

Adjunct Associate Professor Amanda Gordon is a clinical and health psychologist in private practice, helping individuals with chronic illness and their families manage their lives and relationships. She began by emphasising the mind and body connection, that both are equally as important. Congenital heart disease although limiting, is not visible. So this makes it harder for others to empathise or understand. Surely, if you look fine, you must be fine?

The main areas covered for someone suffering from a chronic illness were:

• nurturing your relationships
• coping strategies
• self care
• building a support network
• managing loss and grief

Some helpful advice summarised below:

• Be informed about your disease, the more you know, the better you'll do.
• Accept limitations, but also the gifts.
• Positive psychology: focus on what's going well, rather than what is going wrong.

The three blessings is a technique Professor Gordon shared to help remain positive. It consists of keeping a gratitude journal, where you write three good things that happen every day. This can be a reference for your yourself when you are having a bad day or period, or something to share with your loved ones. Three x 365 days in a year =  1,095 great things to look back on every year.  

I'm a strong believer in our emotional well being having an impact on our health and manifesting physically. I think the three blessings can be a good technique particularly if negative thoughts tend to usually overpower the good ones, it helps refocus. Why spend our precious time being miserable...?

I am also very passionate about mental healthcare in general, but particularly when suffering from a chronic illness or having experienced a traumatic event. Mental well being is a minefield.  The information presented above is overly simplified and high level and perhaps, not as practical or tangible as some people may require it to be. Every person's condition and experiences are completely unique, so like physical exercise for an adult with CHD, I believe that tailored care is required. And seeing a psychologist, psychiatrist or counsellor one on one will be able to provide this specialised care, consisting of advice and techniques that should work for the individual.

Finally Jann Kingston, the CEO of Heartkids gave a short talk. She explained this day was organised because there was a demand for it because once heart kids grow up, there is nowhere to refer them to. Heartkids are working on a registry for CHD, this will help collate data to be able to develop further services and help people with CHD stay connected to these services.

 

The key points from the day for me were:

1. ACHD is a growing area increasing in size and complexity. Holistic care is required from cradle to the grave, encompassing all areas of life.
2. If you're suffering from CHD, ensure to be seen at least once by an established ACHD centre listed here.
3. Prevention is better than cure in context of pregnancy and ACHD. Pre-plan and enlist a team approach to managing your pregnancy.
4. Some exercise is better than no exercise.
5. Always speak to your cardiologist to obtain approval for undertaking any exercise program or physical activity. If possible, speak to an exercise physiologist for a tailored program.
6. Best to be well informed about your personal condition and state of health.
7. Nurture and look after yourself.

Some concerns, observations or comments that came up from the audience on the day were:

• There is no comprehensive guide of all heart conditions.
• There isn't a comprehensive list of cardiac programs or exercise physiologist gyms where adults with CHD can go to.
• Physicians need resources as much as patients do for example regional or non specialist doctors.
• Lack of quality information to help increase medical support and funding.
• No official organisation for adults with CHD.
• People are uninformed about the services available to them.
• Not sure of the best channels of communication.
• Development of some sort of mentoring program for children and adults with CHD.
• The clear need for a support group. The most frequent comment made by attendees was how good it was to connect with other adults suffering from CHD.

The intention is that this will become an annual event, the success and likelihood of which was pegged on this first off event in Sydney. Many of us suggested that we looked at moving it around Australia, so the location is not static and the event can be accessible to more adults with CHD.

All in all it was a wonderfully informative and touching day. Apart from learning many interesting facts and how to access some very useful resources, it was the connections with people that affected me the most. Some people shared some very personal and painful stories and for their (and the speakers') openness, experiences, love and kindness, I thank them.

Fight or Flight

Following a major life event, there are good and bad things about life moving on as per normal. Normality can offer a good distraction; a reason to keep going; or a good escape from the seriousness of recent events. Alternatively, it can be such a good distraction, that you never get a chance to deal with your emotions to then be able to move on and live a new kind of normal. It's so easy to get caught up in existing and functioning, that we don't permit ourselves the mental or physical space needed to deal with our emotions.

Another factor that can impact this, is time. Often it's a necessity to simply keep functioning because anything more than that is not possible, so with time, other things come out in the wash.

I was so caught up in functioning and dealing with one issue at a time, that it took me a good eight months post cardiac arrest, to realise that since the cardiac arrest I've been having nightmares every night.

I couldn't tell you specifics about the nightmares because they have always been so muddled, but the constants have been the vivid emotions I've been experiencing in them. It's always the same: violence, fearfulness, loss of control, confrontation, anger, anxiety, hatred, cruelty, hopelessness, desperation, chaos, being judged, frightfulness, frustration...amongst others. In my nightmares, I'm always pushed into situations I don't want to be in or deal with, with no choice but to haphazardly confront them.

Image courtesy of Think Inc.

To say that I've been exhausted after the cardiac arrest, is an understatement. I was constantly so tired and looking for reasons for this exhaustion, that I completely missed the obvious one: good quality sleep. It wasn't that I wasn't sleeping enough; or didn't have the ability to fall asleep. We even bought a new mattress! It was that I was having nightmares: an inescapable loop of the same, stagnant emotions in similar scenarios every single night. As a result I would wake up exhausted, in a haze and blur of confusion. I'd be cranky, impatient, unclear, unable to focus on any given task for too long, and would get worn out really easily and quickly.

So I focused on the tiredness as perhaps being caused by hypothyroidism. The (slight) hypothyroidism I've been experiencing most probably being a result of the heart medication amiodarone that I am on. There was no other logical explanation because the only thing my blood work showed were the TSH levels to indicate the hypothyroidism; and a spit test that I did showed low levels of progesterone. Essentially both tests showing that my hormones are fucked*. My cardiologist, GP and the head endocrinologist at RPAH were not concerned with my thyroid results and advised to simply keep a close eye on it.

So what next, what's the problem? No one could give me an answer. My cardiologist advised that perhaps the severe tiredness was due to sleep apnea, which is a common symptom for heart patients. So I went to my go-to guy for all things advice: my shrink. I figured he'd have a good colleague or know of a clinic he could refer me to do a sleep study. At this point I began observing my sleep looking for sleep apnea signs, but what I found instead were the constant nightmares. I told my psychiatrist about these and he was not surprised: they are a common symptom of PTSD. So we trialled a blood pressure medication which has been proven to assist PTSD patients with their nightmares. It switches off the fight or flight response experienced during sleep, giving you a chance to process and therefore wake up more refreshed and have better day-time function.

Hey presto, as expected, the medication worked overnight. The first nice dream I had in approximately eight months: and it was about my sisters. I was a little girl and they were all fussing over me and looking after me, loving me and nurturing me. The complete opposite scenario and set of emotions from my nightmares. It was exactly what I needed.

Following this I visited completely new places in my dreams. Not all my dreams were pleasant, but I no longer felt the need to escape them. In my dreams I could now control my emotions and I had choices. I could choose what I did and how I responded, and could even walk away from them or change them. This was a complete turnaround from being forced to continuously and haphazardly deal with unpleasant situations.

I took the pills for about a week and then stopped. I wanted to see what would happen when I came off them. It's been over a month now and I am happy to report that I am still visiting new places in my dreams, interacting with people and feeling more and more empowered in them. With the option of taking the medication again should I need it. I feel that even just that one week of quality sleep (minus the fight or flight hormones) was enough to kick my brain over into a new state of mind and function. I feel like a new person and enjoy each day at home with my daughter so much more now (as I'm sure she does also because I am no longer cranky). I have the ability to focus on tasks and feel much more energetic and capable of doing the things I like to do, including exercising regularly, socialising and preparing nutritious meals.

And the road to recovery continues...

What I've realised from it so far, is that the road is rocky with bumps, ditches, holes and smooth parts in between. Everyone has their own path and set of circumstances. But what I do urge all heart patients (particularly after a major cardiac event) is to not neglect their mental health and state of mind. Emotions play a major part in our healing process and capability with dealing with whatever gets thrown our way.

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*I've been doing some research on hormones and PTSD, so more on this stuff later, in another post.

Setting Boundaries

Fuck you very much 2014. Just when I thought this year was (finally) wrapping up nicely after a tumultuous, challenging and death defying crescendo, it throws two more curve balls that smack me right in the face.

It's true, my psychiatrist was right - my family do not do things by halves. When we're in, we're all in. We've had two terrible sets of news relating to my siblings. During a time when happiness is supposed to reign (Christmas and all that happy, fun shit), my two sisters have had to come to terms and deal with some terrible health related issues. It's been a downer to say the least.

When I was talking to one of my sisters and she ended up consoling me about her bad news - when I should have been the one consoling her, I got thinking. It reminded me of when I had the cardiac arrest and had to console family members in the hospital. All the meanwhile I wasn't quite sure what was going on myself. The shoe was on the other foot now.

My other sister handled her situation quite differently - not wanting to discuss anything, and with her boyfriend giving me the news.

The point I'm trying to get at - is bad news is bad news, no matter how it is communicated or received. There are so many confronting and uncomfortable emotions to deal with and that can make communication during these bad times more often than not, awkward. Everyone deals with things differently and there is no right or wrong way. It's whatever the individuals are comfortable with at the time.

Last year when my great niece died, her mother at times got very angry about the types of things that family and friends were saying in an attempt to console her. I get it, the world can be a fucked up place sometimes and when fucked up things happen like a healthy 9 month old dying suddenly, I'd be fucking angry too with probably anything anyone said or did. But she never said anything about it (except maybe indirectly rant on Facebook about it); she expected that everyone else should know what she wants to hear, in the way she wants to hear it.

The pieces fell together in my in-laws kitchen the other day. It was the last straw - I was so angry at people wanting to help by giving me unsolicited random advice. People wanting to help heal and fix poor broken (heart problem ridden) Angie.

When in reality it's just a way to attempt to fix themselves, so they project their shit on to me.

I realised at that moment that there's no point being angry. People are not mind readers. Their attempt to help or console all come from a good place of caring, concern and love. We are just as responsible for how we respond, as they are for what they say.

The problem in my situation has been the lack of response I have been giving these seemingly helpful people. It's because I didn't want to make them feel uncomfortable, so I'd nod through and listen to all their hair-brained, irrelevant, out of context quick fixes and suggestions for helping me with my heart problem - whatever that is - because they don't even quite know.

I'm responsible for setting my boundaries and maintaining them. So here goes, next time someone gives unsolicited advice or assistance, this will be my response: I'm fine, thank you for your concern and advice. At this stage I am happy and healthy and have my situation under control and under the watchful eye of relevant health care professionals.

Fuck you very much. Thanks 2014, you've had some highs and some really low lows. On to bigger and better things in 2015.

Wishing everyone a happy new year full of love, peace and most importantly, good health.

The Overwhelming Lightness of Honesty

...or the overwhelming lightness of living your values.

I've been shitty lately. I couldn't put my finger on it until I was in my psychiatrist's office last month. There were a couple of catalysts but the main one that stands out in my mind is the Mexican standoff I had with a stranger in a public shopping centre carpark, the day before I saw my shrink. That was the peak of it.

Firstly, I had gone against my better judgement (and experience) by going to that carpark in the first place. In this suburb I usually park in the (un-metered) back streets about a ten minute walk away. The benefit of this is threefold: light exercise, chance to clear my mind before my appointment and no time pressure for the free parking. In this instance I thought I might try the shopping centre carpark instead, in case I wanted to also do grocery shopping. As always in the carpark, there was mass confusion and people doing stupid and illegal things like driving in the wrong lane and blocking off traffic. Long story short: a lady and I were going for the same carpark. If another carpark hadn’t become available that moment so we could each have one, I’m not sure what would have happened.

For many of you there comes a point in your life where for whatever reason, you may just snap it. You’ve kept doing the same thing over and over again and suddenly you realise, it’s just not working…and it probably never did, but you did it regardless.

I reached this point in that shitty, dark and dank basement carpark. The perfect setting for what felt like a lifetime of frustration that finally peaked and exploded. I realised in that moment that I had been putting up with a constant conflict in my value system, which created that angst, frustration and inconvenience, just so I can be nice and liked by other people. Liked by whom and for what? A stranger for letting her have the carpark, so she can be appreciative and like me, when she doesn’t even know me and will never even speak to me? WTF?!

My Mexican standoff breakthrough is, I’m sure, more (psychologically) complicated than I’m letting on. But it is not necessary to get into the detail or to analyse it to be able to portray the same takeaway message.

When a major life event occurs, like the cardiac arrest in my case, it hopefully makes you look at things and your life differently. The cliché of life being too short really rings true. Furthermore I believe it’s important, if not mandatory, to hold on to that life is too short concept to be able to make positive change in your own life. From one moment to the next, life can be over. So why spend your precious seconds, minutes, hours, days, months or years of your life being unhappy?

image courtesy of Your Core Light

I find that when I’m in the flow and living in harmony with myself and the world around me is when I’m honest with and true to my values. And that means knowing yourself and having the courage to say no to other things that conflict with those values and your happiness.

On The Road

It's been 7 months since my cardiac arrest. In August and September I took some time out to go on a holiday with my husband and daughter. We had our time at the beach, caught up with some dear friends and visited family who live overseas. Although tiring because it was such a big and long trip, it was really good for the heart and soul, and much needed.

I expected the reunion with my family to be much more emotionally charged, after nearly dying and all, but surprisingly it was quite mellow. In retrospect, it was probably for the best, as I don't want to dwell on the past and on such a traumatic event. Plus, there was nothing significant that hadn't been said already.

My husband had to leave ahead of me and my daughter to return to work, so it meant that us girls traveled back on our own. I was nervous about this to say the least: four flights, two of which were long-haul. But whenever the nervous thoughts entered my mind I would avoid them, instead opting to deal with the matter when it was at hand. My psychiatrist once told me I have a choice about when to think about things (this was specifically about traumatic thoughts, but I find applies to everything in life). Over thinking builds things up in my mind to the point where they are overwhelming and the cause of a great deal of anxiety and stress.  So I chose to plan (by including plenty of rest stops between flights, plus assistance where possible), and then stop thinking about it. I found this strategy worked really well for me. The trip back was enjoyable, relaxed and smooth with no hiccups.

All this, coupled with the physical distance from home, meant I had a really good break away from being "sick" and having to attend the endless procession of health appointments. When I met new people, they didn't know me as the chick who had a cardiac arrest, so it was a nice change. I felt I could reinvent myself. This made me realise that perhaps the worse culprit in seeing myself as the cardiac arrest patient, has been me.

A few weeks ago I got the green light from my cardiologist to drive again (cardiac arrest patients are not permitted to drive for a minimum of six months post a cardiac event). I've felt a big relief and a surge of new found freedom.

I've seen all these steps as significant building blocks in increasing my confidence. In that light, I feel I've reached a major milestone and look forward to the next stage in my life, whatever that will be.

Support Group at RNSH

A couple of weeks ago I attended a support group at Royal North Shore Hospital (RNSH). It was primarily aimed at an "older" audience, although there was another lady near my age, Kim, who also attended.

It became very clear that not only different age groups, but also people, have different concerns and at times approaches to life and living with an ICD. The best example of this was an older patient exclaiming that she used to do everything right and still had a cardiac arrest. So post arrest and having an ICD inserted, she no longer takes things too seriously and instead indulges in a nightcap or two...on most nights. I guess we all have different ways in dealing with things, and major events like a health scare can motivate us to live life quite differently to the way we did before.

Kim pointed out this difference and outlined that due to having two young kids to look after (plus heart health complications), her concern is prolonging her life as long as possible. So for her, there is no indulging in a nightcap or any alcohol in fact at all, ever.

Myself on the other hand, I like to employ the more balanced French/Italian/Greek way of living: having the odd small glass of wine with a meal. Good for the blood and circulation I say!

There were two speakers organised for the day:

1. The lady spoke about needing to understand everything that was (medically) happening and taking control over her own care.
2. The man spoke about having a complete life turnaround. He used to be a high-flying successful business owner who worked too many hours, didn't exercise and ate and drank really badly. Since his arrest he's sold his business, exercises 5 times a week and enjoys spending a lot more time with his family and friends.

It was interesting to see the differences between the two speakers. The floor was also opened up to the audience over a lead discussion, as well as a question and answer. Even thought quite a few experiences were revealed, it was reassuring to see the differences and also know that most people felt very similarly about having and living with an ICD. I think it's important to connect with others going through a similar experience so you don't feel as isolated or alone. Family and friends can be supportive but unless they've been through the same experience, they just don't get it.

As much as I need to understand what's logically going on with my heart and why what happened did happen, I'm afraid there aren't any certain answers for me. I've been working hard to let this go so I can go on with my life and live without fear. So I've taken the more high-level, focus on what I can control type of approach. Similarly to the gentleman speaker, what has changed drastically for me are my values and consequently the way I live my life. I've given myself no option but to prioritise regular exercise (3-5 times a week). I feel that's one major positive thing I can do not only towards my recovery, but more importantly for my long term health and vitality. Never before in my life have I had this clarity, motivation and dedication towards my exercise and well being. As the noise drops away, things seem a lot more simpler too and life more enjoyable.

I'm looking forward to attending the next ICD Support Group at RNSH later this year. It's supposed to be aimed at a younger target audience and have a large focus on exercise with an ICD. I bet I will have a lot to offer to the conversation!

Wake, Eat, Live, Sleep, Repeat.

I'm tired. As I'm writing this I'm sitting on a stool slumping over the bench and my iPad. I've been wanting to write for a while but haven't had the energy nor the time. My hubby went back to work a month ago and honestly...I'm still adjusting to doing everything on my own, including looking after our one year old daughter. He's a great help when he gets home from work, but I feel like stuff (chores, cleaning, organising) are never ending. I've been overwhelmed at times. I'm getting irritated. I go to bed and fall asleep immediately from exhaustion.

I understand that all parents are tired, but I sense that my tiredness is on another heart-related level. I think I've been neglecting the fact that my capacity is not the same as someone else's (with no health issues).

What's been compounding that is that after a recent reassessment, I've realised my personal values were in the wrong order. I have been putting family and friends first. Noble, sure, maybe? But the reality is that if I don't look after myself then I won't have much to offer my family or friends or anyone else for that matter. So I put health first. This has changed my life and given me purpose, consistency and routine. Not bad things during a (emotionally and physically) tumultuous time.

Wake up, brekkie, gym/or walk, grocery shopping, lunch, cook, eat, sleep. Add a dose of housework and lots of playing with Zoe in between all that stuff. Repeat.

Some days are a struggle to do any of that apart from eat and sleep. I try and listen to my body (it's hard, my mind is quite overpowering and pushes me to over commit and overextend myself) but some things, like keeping my daughter alive and happy, must be done. 

I've had to slow way down. I feel like I'm at 50% capacity i.e. doing half the amount of stuff I did before and have had to make changes to my life accordingly. I've tried to be creative in my approach because I'm coming to terms with the fact that I can't be everything to everyone. That concept is so unrealistic and unattainable, causes constant unnecessary angst and stress...but that's another topic.

Here are some things that I've been doing.

Minimised social commitments. Particularly during the week. My motto is now low key and quality over quantity. Major life events make people realise things: if any of my "friends" didn't come see me post cardiac arrest either in the hospital or later at home, then I won't be going out of my way to see them...or probably ever talk to them again either. So that also minimises the amount of people "in rotation" in our social calendar.

Prioritising. I can't do everything. I can barely do half the stuff I did. Realistically some things slip, so I find it easier to let things slide once I've prioritised what's important and what's less important. And then not feeling guilty about the things that do slip!

Organised a house cleaner. They can be pricey here in Australia, so I've booked one in for once a fortnight only. I'll be paying her out of my personal budget. It means a few less lunches out but the way I've been living lately, that's not an issue as I'm primarily home bound by choice.

Online shopping. They deliver the groceries to my house and place them on my kitchen bench. Convenient and considering I'm still not allowed to drive, necessary. Any bits and bobs that I need (fresh fruit, veggies and meat) I pick up after the gym each day from my local grocer/butcher.

More online shopping. Yep, don't even want to go to a shopping center to shop for fashion or cosmetics or presents. I order that shit online and it gets delivered to my door.

Ask for help. I delegate tasks to Chris, particularly lifting heavy stuff like piles of washing. I also now take up my friends' offers to help wash the dishes when they come over for a meal. And my new cleaner? I've asked her for (paid) help because I can't keep up with the housework.

Image borrowed from www.nsf.gov.

Automate and mechanise. I'm truly embracing industrialisation by using machines like there's no tomorrow. Some days the dishwasher does two loads; I put most things in there now! Hanging washing? I don't think so. I'm pulling that stuff from the washing machine and putting it straight into the dryer. I'm cutting out steps where I can. Sure our electricity bill is slightly higher but it's worth my sanity and energy.

Batch food preparation. If I'm making something that can be frozen, I will make extra to freeze some portions. That way if I don't feel like cooking one day, I can defrost and have something quick and easy on hand.

Saying "NO". Hard for me to do when I've spent my life trying to make others and myself happy. But no choice. Used in the correct way, "NO" can be very powerful and liberating. It helps set limitations, boundaries and expectations.

Sleep. My average generally is eight hours a night. Some nights I've slept nine or 10 hours and still don't feel like it's enough. If I don't get enough sleep I can't function and find that my energy levels are greatly affected. Most nights it's hard to drop stuff and force myself to go to sleep, but this is where the prioritising comes in handy.

I'm getting there - to whatever my new normal is meant to be. I feel like I'm getting organised but my energy levels are still not where I want them to be. I'm still focusing on my rehabilitation and finding a new groove in my life. It will take time and I'm understanding now, that's OK.