At diagnosis I felt like I had been involuntarily picked up and placed on a completely different path in life – one that felt unfamiliar, uncomfortable, and uncertain. I so desperately wanted to be back on my previous path in life. One that was more certain, comfortable and carefree, so I tried my best to ignore it all. After muddling through for a long time, I soon realised learning to navigate this new path was the only way to move forward in life.
That was 22 years ago now and now I can confidently say I am a whole lot better at navigating this path I never chose. In Myositis Empower Hour 2023, I had the lovely opportunity to share and reflect on many aspects of my journey with myositis alongside some of my good friends from all around the world who are also navigating life with myositis.
“Argh, I have to sort out my house these holidays!” one of my friends sighed.
My heart jumped with excitement at the thought. Having a good declutter and organise is one of my favourite things to do and after another big school year the house is definitely in need of a good refresh and reset!
After chatting to my friend I preceded to send her pictures of ways I’ve organised different areas of my home over the last few years, then I thought I might share them here in case anyone else would like some ideas. Full disclosure – it doesn’t always look like this but love the order when it does!
More info on my game changing ‘House Folder’ coming soon also!
(previous version posted on myositis site as ‘My Top 10 Practical Tips for Living the Myositis Life’)
Growing up with myositis, my life has meant constantly adapting to the changes myositis and other chronic conditions have brought over the past 25+ years. If I were to narrow it down, I believe there are two main things that have helped me keep going.
1. Finding meaning and purpose in each season of my life.
2. Organising as much as I can in my life, to manage the unpredictability of living with chronic illnesses and dynamic disability.
We are all at different stages of our journey living with myositis or other chronic illnesses and can learn so much from each other, so I’d love to hear your best tips too. Here are a few of mine to get us started…
1. PRIORITISE REST – QUALITY OVER QUANTITY
The most helpful thing I did early on was start prioritising rest. For me, I had to learn to see it as ‘quality over quantity’, by making the most of things in small increments and pacing myself, rather than overdoing it and being out of action for days, weeks or even months afterwards.
One way I did this was by splitting my day in two, by implementing a non-negotiable afternoon nap every day that I schedule my day around no matter what. These days it is usually 12-2pm or 1-3pm and like many others with myositis or other chronic conditions, I also rest frequently throughout the day, sometimes requiring up to four naps a day. I also try to maximise when I have the most energy for errands or appointments.
As much as I miss things I used to enjoy, I try to cut any unnecessary activities that deplete my energy and focus on the things that I can do more easily (less active activities, journaling, craft, art, reading, writing, piano, games).
2. FINDING THE SHORTCUTS
I try to have a place for everything in my home so it is easier to maintain, as well as finding the easiest way possible to do things. I sit down to get ready in the mornings and lean my elbow to blow dry my hair, do online shopping, kneel or sit down while I prepare food, cook oven meals, use a beach trolley to transport things around the house instead of carrying things and using a clothes rack to hang light weight clothes, often sitting down to do this. I also get my family involved in day to day running of the household, so it’s more of a team effort. I’m keen for any shortcuts that make living life with myositis easier!
3. WEEKLY GUIDE
‘Guide’ being the keyword here, meaning it’s flexible. Breaking my week into smaller, more achievable goals I’d like to or need to achieve, contribute to a larger goal and a feeling of accomplishment at the end of the week. It gives me variety in my days and is much more sustainable for me in the long run. If I don’t feel up to doing something one day, I try again another day. This is my guide –
MEAL PREP MONDAY – Clean out fridge. Have groceries delivered. Cut up veges for the week.
TIDY UP TUESDAY – Do a little clean if I’m up to it and tidy up (my husband usually does the mopping for me). I also have little daily tasks I do every day to maintain the house, like stacking the dishwasher and a load of washing.
WRITING WEDNESDAY – Wednesdays I try to do a little work on my writing.
THOUGHTFUL THURSDAY – Intentionally do something nice for someone else – spend time with someone, make a phone call, send a care package, card or gift, or maybe send a message to let someone know I’m thinking of them.
FUN FRIDAY – Do a fun activity at some stage this day – perhaps some painting or craft with my kids or watch a movie together.
SLEEP/SOCIAL SATURDAY – one of my favourite days!
SOUL-CARE SUNDAY – Listen to podcasts/Church online, spend time with family, read, paint, watch movies and sleep some more!
Feel free to use my ideas for your own weekly guide or have a go making your own.
4. MEAL PREP / MEAL PLANNING / SHOPPING
One thing that’s helped me a lot is incorporating ‘Meal Prep Monday’ into my week. This way I know I will have healthy food ready to cook through the week.
Meal Prep Monday for me is sitting or kneeling on a chair while I chop up vegetables or fruit for a few days, then put in glass containers in the fridge. Sometimes I do a few at a time throughout the day so it’s not as tiring. It’s great having food for lunches, smoothies and at dinner when I’m too fatigued and sore to stand and cook. When late afternoon comes, it is as easy as putting some vegetables on a tray with some meat on a separate tray or dish, such as salmon, fish or chicken and cook in the oven. I often cook extra for other nights or some extra chicken for salads for lunch. My husband cooks on the weekends and has a different repertoire of food, so we still have the variety in our diets.
I do all of my grocery shopping online. I created a master grocery shopping list that’s in my house folder and I have also laminated and stuck inside the pantry cupboard. It’s as easy as ticking what I need with a whiteboard marker each week. I have written up a list of all the meals I know, including an ‘Easy’ section, so it takes all the thought out of it.
5. HOUSE MANAGEMENT AND MEDICAL FOLDERS
One thing that has helped with the overwhelm was creating two folders, a house folder (for anything house or family related) and a medical folder. They contain:
House Folder
Anything house and family related – more info on mine at a later date!
Medical Folder
Medical Information Document (more info on this below)
‘In Case of Emergency’ information and numbers
Official info sheets about my medical conditions
Scripts and check list
Recent relevant results (the rest get filed)
Pathology forms
Questions I would like to ask at my next appointments
Specialist Letters
6. MEDICAL INFO DOCUMENT
There have been a few times when I’ve ended up in Emergency with complications and I haven’t been prepared. The last thing I feel like doing, as well as explaining my long and complex medical history, is trying to remember what medications and doses I’m on, spelling out names or looking up phone numbers of my emergency contacts or Dr’s.
For times such as these I created a ‘Medical Info’ document or a ‘Med Cheat Sheet’ as I like to call it. It’s also been helpful to give a copy to any Specialist or Dr I’m seeing so they have all the up-to-date information.
It contains:
My personal details
Medical conditions
Allergies/intolerances
Medications chart with dosages and what times of the day I take them (including any vitamins or supplements)
Details about specific medical situations
Specialist and Dr contact details
Emergency contacts
I keep a copy on my phone, wallet, medical folder and in my medication bag as well as a copy for each of my emergency contacts.
Sometimes there are official print outs from organisations or commnication documents from your local health area, so I recommend looking into what’s available in terms of this in your own area as it’s always good to find helpful resources.
7. MEDICATION ORGANISATION
I have created a medication bag out of a couple of nice cosmetic bags with daily medications, plus a couple of extra important medications, vomit bag and medical information. I can grab it in a hurry if I need to. I often set reminders on my phone throughout the day so I remember to take medications on time as on four-hourly medication round the clock, especially my 2:30am alarm.
Each week I organise my medications, some into separate medication containers and have a laminated list of each of the six doses of the day and what I take in each dose so I don’t have to think about it. I write on the top of the medication bottles with permanent marker in shorthand what each bottle contains and how many a day I take to take all the thought out of it. I even draw little pictures sometimes with a sun or moon for morning or evening – just to make it all a little more fun. I also have a master list I’ve laminated to let me know if I need to order anything (usually well in advance).
To make things easier in case of emergency, I now have a grab and go medication tub clearly labelled ‘TAKE TO HOSPITAL’ with essential medications and it also contains any important paperwork (med info sheet, specialist letters, adrenal crisis info).
8. TIREDNESS OR MOOD BOOSTERS
I find listening to music a great distraction from the fatigue. As soon as I wake up in the morning, I put music on. I usually wear bright colours (royal blue, hot pink) as find that lifts my mood and I’ve created a folder on my phone of quotes and photos that encourage me, as well as inspiring and often funny chronic illness ones to have a bit of a laugh and most of all remind me, I’m not alone in it. I’m also part of a number of organisations and online support groups with others with conditions I have, so it has been great talking to others who can relate from here and all around the world.
9. EDUCATION AND WORK
I’m not going to lie, for me this has probably been the hardest and most frustrating part of living with myositis, especially being diagnosed so young. It’s been difficult accepting that my body with myositis has very different capacity than I would have had if I were healthy but I’ve had to learn to adapt as the years have passed.
I’ve experimented over the years as to how much I can manage and what is sustainable for me (with much trial and error). I attended high school part-time when I could. One arrangement when I was able to manage working part-time, was splitting my hours over three days (Mon, Wed, Fri) and working a few hours per day. I would nap for a few hours when I got home each work day and slept and rested the majority of the days off in between. For conferences, I spoke with my employer and scheduled time to leave for an afternoon nap and caught up on what I missed when I rejoined the group later in the afternoon. I think one of the most important things for me was finding something I found meaningful and that I was passionate about, so that it was worth the energy it cost me.
During other seasons of my life when I have been unable to work, I have found meaning and purpose in other things, such as art, Church groups and volunteering for various groups and organisations, one of my favourite roles was ward visiting and writing for an organisation who help children in hospital. These interests gave me the flexibility to be as involved as much or as little as I felt up to at the time, developed new skills, helped me to think of others and it gave me something to look forward to each week.
10. GOAL SETTING
A couple of years ago I stopped making so many achievement-based goals. Of course, I still have one or two long-term goals I would like to achieve in my lifetime but in the short term, but the past few years I’ve kept them simple by choosing some areas of my character I would like to grow in, with one main focus for each year.
A couple of years ago my goal was ‘Strength’. I had a big year ahead health wise and I needed all the strength I could get, not just physical strength but internal strength. So with this in mind I thought about ways I could work on being a stronger person on the inside.
A few ways I did this:
– Reflected regularly on what I’d made it through already.
– Focused on taking life one day at a time.
– Quotes, scripture and books – created an album on my phone of inspiring, encouraging quotes and scripture about strength and find books to read that relate.
– Music and podcasts – Found uplifting songs and podcasts about strength to encourage me.
– Support – Regularly checked in with my close family and friends, my medical and support team and committed to monthly peer support with others with same condition as me.
I have certainly learnt a lot over the years about adapting to life with chronic illness and one thing I know is there is always something new to learn and try as things are constantly changing. I would love to hear your best tips on living with chronic illness too!
For the many people asking for updates on how this year is going…
1. PERPLEXED, PUZZLED PROFESSIONALS & PROOF
“CRACK!” I heard as the middle of my right foot gave way as I stood in my kitchen one Saturday morning in March.
At only 35 years old, ‘standing in my kitchen’ was a pretty unimpressive way to break my foot but here I was again, unbelievably and ridiculously almost a year to the day since it happened the first time ‘walking normally at home’. These ongoing bone issues and somewhat spontaneous fractures due to osteoporosis (sometimes a complication of living with myositis), seem to be yet another thing to manage.
It is not unusual for medical professionals to be confused over my case, especially as I have several rare and complex conditions, so I’m used to seeing the same puzzled, perplexed looks on their faces – this time was no different.
We got there in the end (after 2.5 weeks!) with the proof and validation that in fact the loud ‘crack’ I heard and felt, was in fact my foot breaking yet again! The MRI showing a very clear new 4b grade fracture of my 3rd MT (last year was 5th MT). Estimated 3–6-month recovery, so back in the boot and wheelchair for the last couple of months and unable to drive.
2. PRISON OR PURPOSE – THE POWER OF PERSPECTIVE
Perspective is a powerful thing. I had a choice. I could choose to see my loss of independence as a prison like I spent a lot of time feeling like last year or this time I had another choice – to focus on purpose, productivity and pursuing my passions – it was time to do what I was meant to do!
There are times when frustration snuck in and my moonboot felt more like a home detention ankle monitor, but after some initial feelings and expression of said feelings at times (thanks Mum & Dad!), I eventually managed to channel my frustration into something more productive or I was encouraged in another way.
One encouragement came in the last school holidays when I had some appointments and IVIG treatment at the hospital. My husband and children were going to the city for the day while I was there. As we ventured toward the city, I sat in the passenger seat feeling pretty over it all and discouraged, “Ahh I have to go to the hospital when you guys are going to have fun in the city all day”.
But what my son said next stopped me in my tracks. “But why is that a bad thing?” he asked. “You are going to the hospital for the good medicine. It’s a good thing!”
Then my husband chimed in, “Yeah the hospital is your second home! I bet you’ll just be there chatting!”
I had to laugh as that particular day as I wheeled myself into the infusion centre, to my pleasant surprise the two friends I’ve made there were scheduled at the exact same time as me which is rare. As we sat there laughing and joking around in the middle of the infusion centre, I thought this isn’t so bad, maybe this is exactly where I’m supposed to be!
3. PRIZED POSSESSIONS & PURSUING PASSIONS – PLAYING PIANO & PICKING UP THE PAINTBRUSH & PEN AGAIN
A few months ago now there was a cyclone warning for the area we live. As we prepared, I began pondering if in the unlikely situation my home was somehow damaged or I had to evacuate in a hurry – what would I actually take?
After pondering this a while, it was interesting what I would consider to be my prized possessions. They were the sentimental items – photobooks, special letters, writing and art projects. It made me reflect on what I valued and what I was investing in currently, and in what ways I wanted to be more intentional about how I was spending my time in the future.
With that in mind, through this latest season I chose to focus on pursuing my passions –
Piano – I started teaching my children piano which they are loving learning and I am especially enjoying the little compositions they are making, complete with their own adorable lyrics!
Paintbrush – I have set up my art supplies and have picked up my paintbrush again recently, so I look forward to more painting soon!
Pen – I have been working on a little writing project lately, with some confirmations along the way that I’m on the right track with it. More details on this later!
4. PAIN, PREDICAMENTS & THE POWER OF PRAYER
“Is your foot painful?” is one question I have been asked countless times in the past couple of months.
To be quite honest, the most painful part of it all has been the impacts my broken foot has had on things logistically with suddenly being unable to drive again. It’s very problematic when your capacity suddenly doesn’t match your responsibilities, especially the logistics of running two young children around and a husband who works in a completely different direction.
One predicament was school transport for my kids. My husband is only available certain days of the week and sometimes travels for work. It was all pretty stressful for a while there, we were thinking about all sorts of different options but we managed to muddle through many times with extra help from my amazing sis-in-law and parents-in-law, though my in-laws were coming from almost 1.5 hours away, so them coming that far and that often was not very sustainable.
I am so thankful for many people praying for the school transport predicament. Our prayers were answered when a friend from prayer group connected me with another school and church family who live close by, who very kindly said they were happy to help us out with transport a couple of afternoons a week. We had never met this family but turns out we have a lot of mutual friends, and our husbands had previously played some tennis together through friends. We are so thankful for this beautiful family and the bonus of the situation has been making some lovely new friends in the process!
We have been overwhelmed with delicious meals over the past few months, especially from the incredible couple from Church who turn up regularly loaded with delicious meals and baking. My son loves their blueberry muffins, and my daughter especially loves their lasagna – most times eating it breakfast, lunch and dinner! We are so grateful to everyone for continuing to look after us and especially for the ongoing prayers! I have felt so supported and loved with people checking in and sending so many encouraging messages, voice notes and I have had a number of special visits from friends at home. I’ve really loved our couch catch ups and great chats the past couple of months!
I have really appreciated family and friends taking the time to help me out in different capacities working around their very full schedules so I have been able to get out of the house occasionally. My Mum came up to take me to IVIG and in for surgery and my mother-in-law stayed and helped with the kids while I was in hospital. I have been blessed by different friends taking me to medical appointments that I couldn’t do via telehealth (which makes waiting rooms a whole lot more fun!), coffees, shopping adventures, a Women’s Conference and a Mother’s Day event at school – a few little highlights of the past few months! Thank you all!
5. PARENTING, PUPPIES & PETS
I often ponder the impact of me not being well has on my children (ages 7 and 9) or how they are going with these unpredictable changes to their routines. I try to keep the lines of communication open with them and regularly check in with them to make sure they are doing ok.
In recent months I was messaging a friend who also has some chronic health conditions and we were talking about the impact on our kids. We were both saying they seemed to be coping pretty well. Though after my conversation with her, it had me feeling curious about how they were coping with it all.
At dinner that night I thought I would ask the kids what it is like having a sick mum (funnily enough my friend did the same thing with her kids!). Usually, my son is a very sensitive, sweet kid and very easy going and compassionate when it comes to my health, so his answer took me a bit by surprise. He was quick to respond with a disgruntled, “Annoying!”
Internally I started freaking out a little. Had we reached a new developmental phase? Was he now at an age where it was starting to bother him more? Cautiously but casually I asked him why, bracing myself for his response. His answer was not quite what I was expecting, “Because we can’t get a puppy – because you can’t walk it!”
Then my daughter added, “Yeah, can I tell you what I don’t like too? Cats give you allergies so we can’t get one of those either!”
I burst out laughing, relieved! I think they are fine for now! And just so you know they are not being completely deprived of pets. We did offer them the option of getting a guinea pig if they went to bed on time for a whole month – they lasted three nights and we have not heard about the guinea pig since!
6. PERIODS, PROCEDURES & PLANS
You know when you have the feeling about how something is going to play out, so you just try to ignore things for a while, until you decide to finally face the inevitable.
Well in January this year one of my Dr’s said it was well and truly time to face said thing. Long story short it seems in the next couple of months I will be having a hysterectomy (leaving ovaries). I will spare the details here but more than happy to chat to any ladies about it in person or via private message, especially if you’re going through or have been through anything similar. I would love to hear if you have any good tips or anything helpful you can tell me.
Things have been a bit up in the air plans and timing wise with surgeries, which the planner in me does not enjoy! In preparation, I had one surgery in May which was all pretty déjà vu as I was just one bed number away from where I was for surgery last year and had a broken foot yet again! I am also in a very frustrating situation as other things related to my health are essentially on hold right now until after the hysterectomy and recovery over the next however many months. Though as the Seed Stones I took into hospital for my recent surgery remind me, I need to ‘trust in the timing’.
7. PILLS, PREDNISONE & PUFFINESS
Due to circumstances out of my control I’m on a higher dose of prednisone at the moment which means I’m very puffy as I’m also retaining a large amount of fluid. I’ve had this happen many times over the years as I have been on a range of doses over the past 21 years and due to the nature of myositis, doses fluctuate (some comparison photos below!)
I blow up like a balloon every time I’m on higher doses – from my face right to my feet and there is nothing I can take to counteract the fluid due to my other conditions. Most of my clothes are in boxes up the top of my wardrobe as they don’t fit me right now and I have also received several comments from people who don’t understand the fluid retention.
As my dose decreases so does the fluid – but unfortunately, it is a very long road ahead with having to go even higher for my upcoming surgery/recovery, then eventually post-recovery I will be able to very, very slowly taper down (a painfully slow 0.25mg at a time over weeks/months) over the next few years depending on how the myositis, my heart etc cope with that. There have been a number of setbacks out of my control, so it’s taken a whole lot of hard work to even get to the dose I’m currently on at the moment. To make things even more complicated my doses (and fluid levels) are frequently changing due to being ‘Addisonian’.
Many people have never heard of this condition, so I get a lot of questions about it. I’m ‘Steroid Dependent Addisonian’ which is a rare life-threatening endocrine condition. My adrenal glands have failed and do not make cortisol – a hormone which is essential to live, so I am on constant steroid replacement for the rest of my life.
My body requires steroid replacement 4 hourly around the clock, including a 2:30am alarm every morning. Some Specialists have suggested one day a cortisol pump may be a better option for me for continuous steroids, especially overnight. (I really look forward to sleeping through the night again one day!!)
Being Addisonian I am constantly at risk of going into a potentially life-threatening adrenal/Addisonian crisis, so I wear a medical bracelet and always carry emergency medication and an emergency injection with me. My triggers of adrenal crisis may be things such as extra sickness (especially gastro), significant myositis flares or vomiting episodes, infection, injury, medical procedures, surgeries, monthly cycle, physical exertion, dehydration, significant emotional stress, or any other considerable ‘stress’ on the body. I’m constantly adjusting my medication doses depending on what’s happening with my body, with guidance from certain protocols (‘Sick Day Rules’) and with ongoing guidance from Specialists.
If I’m unable to take my medication for any reason (such as vomiting) it results in me ending up in hospital on an IV hydrocortisone (steroid infusion) and for surgeries I’m admitted the day before to go on an infusion which I continue for a day or two post-surgery. It’s a very complex condition and unfortunately also requires a whole lot of educating and advocating for myself, though on the plus I’m slowly feeling more confident in learning to navigate it.
8. PAINFUL PAPERWORK, PROGRESS & PHENOMENAL PEOPLE
Sometimes it feels as though being chronically ill is a full-time job. The numerous appointments, the behind-the-scenes painful medical admin, constantly advocating and educating etc – I won’t go into all this but to put it mildly, it can all feel somewhat exasperating and exhausting much of the time!
Something that makes it somewhat less painful are those rare phenomenal people you come across who you feel genuinely want to help you and who genuinely care. Those people who are quite happy to work with others and actually act like you’re on the same team!! Those who validate what you are going through, offer compassion and understanding as well as providing you with the help you need. There is so much value in someone saying, “I’m here to listen” or acknowledging it is hard and offering a, “This is rubbish!” (or something to that effect!). Those people you can be honest with and the ones who you can tell genuinely want to help you. Those people who go above and beyond!
So, thank you to those phenomenal people out there who genuinely care!! You make a huge difference!!
9. PATIENCE, PACING & PRAYERS FOR PROTECTION
When I was first diagnosed with myositis, I remember reading ‘a person with myositis will need to take frequent rests throughout the day’ which has certainly been true for me. I’ve had to learn to adapt to living with myositis and I feel quite confident now after so many years – though I have to admit I am not yet feeling so confident in navigating these fractures, which is keeping me on my toes!
As I embark on the uncertainty of this unfamiliar territory, I would love prayers for protection, for stronger bones and for guidance as to how to best manage this. The issues with my bones are ongoing so I need to learn to navigate and manage long term. In terms of treatment, I am on daily bone treatments but extra bone treatments like infusions can be quite complex and some you cannot do continuously, so I am currently on what they call a ‘bone treatment holiday’ (would much prefer a different kind of holiday!) so for now I wait to see what the plan is moving ahead.
As I continue to recover from this most recent fracture, I am easing into things slowly which is taking a lot of patience and pacing myself is vital in now managing the risk of future fractures. I’m hoping with time I will feel more confident in navigating this and figuring out what my body can handle. One of my friends suggested that I just put on my moonboot in March every year now as a precaution!
10. PIGGY BACKS AND RUNNING RACES
One thing that has been comforting to me the past few months is knowing all this is temporary. Knowing all I go through on this earth will one day be over.
As well as thinking of how grateful I am to still be here, I have been pondering something my children said to me a few years back that has been on my mind a lot lately.
“It’s ok Mummy if you’re not better yet. One day you will be in Heaven – we will have running races there and you can give us piggy backs! So don’t worry, one day you will be all better!”
Wow! When did I lose that child-like faith? It is so simple yet so profound. That perspective shift brought me such comfort, peace, and hope. I had previously wrestled so much that I was not healed yet but now I like to think of it as a journey not so much a destination, after all ‘healing’ is a verb.
I have hope that one day, whether it is here on Earth or if I need to wait until Heaven, that every day I’m one step closer to being healed and I really look forward to those piggy backs and running races!
“Well, you’re still here! You’re still alive!” one of my Drs said optimistically just last week.
“Wow, what a journey!” “What a rollercoaster!” I’ve also heard from many in my life, as well as some more ‘colourful’ descriptions of my health situation in recent times too!
I’m so grateful to still be here and so thankful for the prayers from near and far, the amazing practical help and the incredible encouragement from many along the way as I continue to navigate all of this!
The nature of chronic illness and dynamic disability is it’s constantly changing, and you never really know what complication or curveball is coming next and how much life can change in a single scan or a single step!
So as I (very carefully) step into 2025, here are a few things I’ve been pondering in 2024…
PRAYER
I have felt so supported and covered in prayer the whole journey so if you’re one of those people who has been praying for me – THANK YOU SO MUCH! I really appreciate you!
I was actually originally hesitant to share much about what was happening as I was concerned I may stress others out but I was surprised at how much others cared and the ripple effect of family and friends praying for me both here and overseas with their own communities – it was incredibly humbling and very appreciated! Thank you!
Through the highs, lows and rollercoaster of a year, many prayers were answered as I trusted in the timing of things and saw so many answered prayers along the way.
Some of the bigger ones –
The best one – after a long time coming I’m so grateful to have started ongoing immunotherapy treatment (IVIG) earlier this year for the myositis (very rare muscle disease) and my heart and have in recent months had two very promising results! Big answer to prayer!! I have this treatment every four weeks.
The original ‘most likely’ mastectomy surgery etc was downgraded to a lumpectomy/excisional biopsy surgery as what they originally thought was breast cancer due to a number of tests and in the surgeon’s words ‘extensive family history’ was actually a rare condition called PASH, sometimes mistaken for cancer. The original MRI was 2 Jan where they found a suspicious large ‘alien’ looking lesion (4.5 x 4.2 x 2.5cm) and due to a number of unfortunate events and delays, I didn’t get the official all clear until 31 APRIL!!! I’m now under ongoing annual MRI surveillance with next review in Jan 2025.
Surgery was postponed a number of times and six days before one of the proposed surgery dates I was walking normally at home and heard a loud, “CRACK!” – turns out I broke my foot! (thanks osteopenia!) The healing of my foot took its sweet time, but prayers were answered when it finally healed without the need of surgery for that too. Due to the slow healing the original 6 weeks non-weightbearing turned into 4.5 months unable to walk or drive, primarily in a wheelchair in which I couldn’t propel myself for long (things are extra complicated when you also have a muscle disease!) though I can see the whole situation was a blessing in disguise for my heart – both physically and emotionally.
I’ve kept a prayer journal the past couple of years and it’s amazing reading back through and seeing how prayers have been answered – sometimes not in the ways I expect! My prayer journal contains ‘I’m thankful for, I’m worried about and I’m praying for’ sections and I find it really helps to write down my prayers and then let it go. I don’t tend to worry about things when I do this.
A few months ago as I was cleaning out my bedside table and came across a wristband my son had chosen for me at the Mother’s Day stall. I didn’t realise what it said when he’d given it to me but was a very timely reminder when I came across it later – “Always pray and never give up!”
2. PEACE & PROMISES
Despite there being some pretty big emotions along the way, I never actually felt afraid or fearful and throughout my journey I have had this unexplainable peace through all the storms that have come.
A few years ago I was talking with a friend who also has some significant health challenges and we both described how we felt like we were ‘drowning’.
That night as I was pondering our conversation, a chapter from one of my Aunty’s books came to mind where she shared an analogy about a swimming experience she had when she was younger, then described how God is like our lifesaver. As I flicked through the chapter, Psalm 18:16 spoke right to my heart, “He reached down from heaven and rescued me. He drew me out of deep waters”. Wow! What a promise!
I thought back to lifesaving practice in primary school when the lifesaver approached us, we were instructed to turn on our back and float as they pulled us to safety. In that position we didn’t know what waves were ahead, all we had to do was trust the lifesaver to keep us afloat and keep on kicking.
This is a promise I have held onto over the years through of all sorts of storms and waves, and a few that have felt like tsunamis leaving destruction and debris for a long time after! Through it all I have held onto my peace and trusted the lifesaver even though I have no idea where we’re headed. It’s probably not a bad thing that I didn’t know what was ahead!
As a tangible reminder, I have carried around a Seed Stone which has encouraged me in many situations over the past few years – through many infusions, tests, appointments and surgery. It has the words ‘Relax’ on the front and on the back, “Let the peace of God rule in your heart! Colossians 3:15”.
Following my peace in terms of finding the right Specialists and treatments has been very important also (more about this at a later date – that’s a whole journey in itself!).
Music is also something that helps me keep my peace. Two of the many songs have encouraged me through this time, ‘Peace Be Still’ by The Belonging Co & Lauren Daigle and ‘My God Can’ by Katy Nichole – reminding me that I may not be able to change my circumstances, yet I can still have peace in the storms. One of my close friends thoughtfully put some of the lyrics on a beautiful journal for me which has been a great reminder through it all.
3. PEOPLE
As I reflect on this year I just think of all the wonderful people in my life! Funnily enough despite being so disconnected from everything for a big chunk of the year, I have still seemed to connect with many – often on a much deeper level and have even have some new friendships develop in my life in this time.
There have also been those – right place, right time moments like the friend who was working the night I broke my foot. She came to see me on her break, and we just sat there and laughed at the ridiculousness of the whole situation, which made the night so much better!
Then there’s those familiar faces you see around the place that also make a huge difference, like the old friend of my husband who works at the hospital who is a consistent familiar friendly face every time I go there, or the lovely lady who works at my local cafe who I shared a bit of my journey with and now she asks how I am doing each day I’m there – it really means a lot! All these little things make a huge difference when you’re living this 24/7.
I can’t begin to describe how much I appreciate the thoughtfulness of many throughout this time! Phone calls, messages, timely encouraging cards, people checking in to see how appointments or tests went, home visits, the thoughtful surprise care packages at my door, flowers, meals or even just stopping by to drop in a takeaway drink. When you’re stuck at home these little things are big things and being thought of means so much. Even seeing someone for 5 mins can totally make your day and encourage you to keep going!
Whenever I write in one of my beautiful journals, use one of my lovely mugs or drink my special teas (you all know me well hehe), I still think of each person and how thankful I am for their friendship! When I had the capacity in the later months post-surgery, some lovely friends picked me up for coffees and we even had a few fun shopping adventures!
Chronic illness life is something no one would ever choose. I would definitely rather be doing other things with my time and life. Much of this alternate reality is often invisible, misunderstood and can feel very isolating – both physically and emotionally, so it was in some ways nice having others join me in my world for a short time, accompanying me to appointments and treatments or just extra chat time in the car going places. I also appreciate the family and friends in my life who know this is ongoing and isn’t over – so I appreciate their continual support and encouragement through it all, as well as all the various other aspects of life! Love doing life together!
It’s been a real journey in finding the right Specialists and Drs but I have some great ones now, all who give great insights and encouragement at times and I have other supports who I can talk to regularly which I find helpful. (Yes I do the natural approach also and have an integrative medicine Dr on my team also. It all helps!)
I’m so thankful for the family and friends who have prayed for me, who are there for me through the most uncomfortable of times, when I’ve felt so vulnerable and not at my best and who listen to my ‘real’. And those who have listened to me whinging about the fluid retention I’m still dealing with (thanks prednisone!). And most importantly, the friends and family who make me laugh especially in the tougher moments, with one friend constantly reminding with every ridiculous thing that happens, “Don’t worry – this is all just more content for your book!”
4. PRACTICAL HELP
Through much of this year I needed to accept help and learn to ask for help. It was uncomfortable but necessary. I am so incredibly thankful for those who helped us out with school runs when my husband had to travel to the office or away for work (thanks to my friend, sis in law and parents in law), so thankful to those who made us meals and helped out with a few things around the house in the early days. So appreciated!
‘Nurse Mum’ came to a number of appointments with me, especially preparing for surgery, was onto shopping for some button up pjs for me before I even had a surgery date!! and she looked after me post-surgery as I had a 15cm incision under my left breast and a broken right foot (plus the whole muscle disease thing), which made movement quite difficult in the beginning! Thanks to my Dad too who was working on repainting the interior of our house before I broke my foot, then fixed it up again after my not so great wheelchair driving in the house!
Throughout my journey with myositis, my capacities and abilities have changed and I’ve had to adapt over the years and this was just another season of that – learning how to do everything from a wheelchair. It was probably hardest on my husband who had to pick up a lot of the school runs and running me about to some of the appointments, all while trying to work full time in another direction!! He did well to manage it all!
It was quite interesting taking myself out of the equation at home and realising how much I do – or perhaps I was actually doing too much, not realising how capable my children actually are. Giving my children extra jobs around the house actually ended up being a huge positive. They loved helping out with age appropriate jobs and enjoyed the extra responsibility. I sat down and wrote a big list of all the chores, split them between us and stuck the list inside the pantry cupboard, so we were all clear on what needed doing. We all had specific zones and I made a little colour-coded routine and chore chart for the kids which they could tick off.
We had a few little family meetings also which my kids love. My 8 year old son would get out his Star Wars notebook and pencil and write all sorts of notes about things we needed to work on or extra chores he was responsible for. My daughter would tick off what we needed from the master grocery list. When the groceries were delivered, they would help put them in my beach trolley, wheel them to the kitchen and help put them away.
I’ll never forget the day my husband was away for work and the kids came in and asked if they could help clean the house – yes please!! They got to work on different jobs throughout the morning. As they were hanging out their own clothes out on the clothes rack, I overheard them talking excitedly, “This is such a fun day!” then the other replied, “Yeah, it’s the best day ever!”
My then 6 year old daughter was a little energiser bunny helper, thoughtfully doing things without even being asked. She would constantly refill my drink bottle or make me breakfast in the mornings. She even offered to be home schooled so she could look after me but I told her to go and have fun at school with her friends and she could help me after school if she’d like. So as soon as she’d get home, she’d grab my drink bottle to make sure it was refilled with fresh water and ask if there was anything else I needed. We also went on a few shopping adventures together while I was in my wheelchair. She was organised with a list of all we needed that she ticked off and including a stop at a cafe for a treat of course! One time she saw another child with her mum with a motorised wheelchair and turned to me wide eyed and excitedly said, “Where can we get one of THOSE!”
The kids were so resilient throughout this time and I made sure to keep the lines of communication open and check in to make sure they were doing ok with all the changes to routine and to what was happening. The hardest part was being away in hospital for days then recovery time at my parents, but they were able to Facetime, sent me messages and videos. It was best for everyone that I was away during that unpleasant first week of recovery.
God’s hand was well and truly on us. Before I even broke my foot I had a new school mum friend offer to do some school runs for me as she knew I wasn’t well. I thought it was such a kind offer but I didn’t want to inconvenience her though she kept insisting she would be more than happy to drive the kids home some days. So, when I broke my foot she happily stepped in, dropping the kids home twice a week and I really looked forward to our Fridays when she’d stay for a tea and a lovely catch up. She was (and still is) an incredible emotional support to me throughout it all. As well as the school runs, she also offered to take me to the shops if I needed, to a Mother’s Day event at the kid’s school and IVIG at the hospital which made it a whole lot more fun catching up over tea.
Another encouragement was when I returned home after a discouraging appointment one afternoon. Not having told anyone about it, God knew what I needed that day. Shortly after arriving home, a beautiful care package from the kid’s school Chaplain and school community arrived with an encouraging card and some delicious gluten and dairy free baking and meals. It was so timely and the encouragement boost I needed that day.
Another God moment was when I met a lady outside Church. She was waiting on a friend who didn’t end up showing up that particular day, so we got chatting. If I’d only known in that moment what a huge blessing, encouragement and help she would be over the next few months! At the time she offered to make us a meal so she got my number. Of course I was thinking that if she’d message I’d say thank you but we’re ok as you do, not wanting to inconvenience anyone. Though she messaged a few weeks later once I was home again post-surgery, not offering but saying “I’ve made you two meals. When would suit you for me to drop them in?” So lovely!
She didn’t just make us meals that first time, she has continued to make us many delicious gf df meals and baking over the past few months as she realises this is ongoing. It has been especially helpful during IVIG weeks and weeks when I haven’t been well tapering steroids. I’ve really enjoyed her and her husband’s visits and have since met other lovely members of her family – their children and grandchildren. Their entire family has been a huge blessing and encouragement to us in a number of ways! She has a real heart to help and most of all they have also been faithfully praying for my health, sending lovely encouraging messages and have even brought over books and activities for the kids. There are just some really lovely people out there! So thankful for them!
5. PRIORITIES & PURPOSE
None of us know how much time we have on this earth and as much as I try to live a meaningful and purposeful life, I feel it’s not always the case. Despite all I’ve experienced over the last 20+ years, at times I still find myself getting caught up thinking about the seemingly unimportant things or just doing things for the sake of it.
Being forced to rest during this season was not only a positive physically for the physical health of my heart but it was good emotionally too. It was a good time of reflection, a good reset and refocus of what God has put on my heart to do moving forward and asking myself what is really important and what really matters in the scheme of things.
One thing that was weighing on my mind when all this was happening were my kid’s photobooks. I was so far behind on those. I had only done 0-2 years and had about 19,000 photos on my phone. So throughout the months I chipped away at those, often falling asleep on the couch but I kept working on them bit by bit. My goal was to finish them for their Christmas presents which I’m happy to say I achieved. Their books are now up to date to 7 and 8 years old and include their rhyming poems of their entire lives, artwork and a lot of photos, both ended up being about 100 pages each, so more like a little chapter book each! It’s a great feeling knowing they are done and that all those precious memories are stored away in the one place.
I’ve also been working on a few other creative ventures – some things in the chronic illness space (more on that later), some more creative projects and this blog which has been on my heart for a long time, with some encouragement and a little push from some great people in my life. Thank you!
I have since re-done my prayer and goal board. I think the last time I properly updated it was in 2021, so it was a great opportunity to reflect on what I had on there previously, my growth as a person (many of them were character or virtue goals) and reflect on how many of my other goals have come to fruition – sometimes in completely different ways to what I imagined!
6. PERSPECTIVE
It’s funny people were so concerned about my broken foot, yet it’s nowhere near the worst thing I’ve dealt with throughout my 20+ year journey! That easily kept it in perspective for me.
Though one thing I’ve often wished I could do over the years is just pause life – do my treatments then restart it again when I have a better version of myself to present to the world. Though sadly it doesn’t work that way. Life continues whether I’m sick or not, so I know now matter what’s happening or how I feel, I just have to get up and show up and try my best. Whether it’s a regular day, my birthday or even Christmas, this is my life every single day. 24/7/365. There are no days off, no breaks – it is a path I didn’t choose.
There are times when I just want to hide away from the world, but I know I can’t. One such situation was when a friend offered to take me to a Mother’s Day event at school. I sat there the night before, two and a half weeks post op, looking in the mirror thinking it would just be easier not to go. I couldn’t walk, I was sore and bruised from the surgery and still couldn’t even wear a proper bra yet, my skin had broken out from the truckload of steroids in hospital and none of my clothes fit due to the fluid retention from the steroids – so much so I had to rummage through an old bag of donations in the garage just to find something that would fit me.
So as I sat there feeling discouraged I suddenly thought – what was I thinking!? I was going to a Mother’s Day event! MOTHER’S DAY. I was a MOTHER! Something the Dr’s said I may never be, so what was I even complaining about!? Of course I should go and be there for my two little miracles who didn’t care about any of this – they would just want their mum there!
I’m so thankful for the friend who offered to pick me up and push me around there, friends who were pleased to see me, saved a safe seat for me on the edge of a table and those who gave me some lovely words of encouragement. Speaking with a Chaplain friend there, she shared some words of wisdom with me and said I would look back and see it as a little ‘blip’ in the scheme of things which was an encouragement. As uncomfortable as it was to go, I’m really glad I did!
I’ve experienced a lot throughout my health journey and know that I just need to remember things are temporary and constantly changing, so as hard as it still is, I know I just need to have patience and persistence to keep going.
7. PATIENCE, PERSISTENCE & PROGRESS
It’s really not like the movies or TV getting a diagnosis, especially when they are rare conditions. This year was no exception. Where’s House when I need him?! I’m used to things taking a long time – the myositis took over four years to diagnose, my heart condition over 12 months and the Addisonian condition – years and years. Meanwhile years and years of feeling horrendous (to put it mildly) as I was actually being chronically underdosed and unfortunately the consequences of that I’m still dealing with now.
“The surgery and recovery is the easy part for you!” commented one of my surgeons back in April. We are now in December and I’m still not even halfway to where I’m meant to be as yet. Being ‘Steroid Dependent Addisonian’ (a rare life-threatening endocrine condition) makes life incredibly complicated. My body doesn’t produce any cortisol (which is essential to live) so I’m fully steroid dependent and my body requires 4 hourly steroids around the clock (and yes that includes a nice 2:30am alarm). It’s an unpredictable condition, requires constant dose adjustments for a range of things and I carry an emergency steroid injection at all times. Basically the next year will be continuing to navigate all of that and attempts to get my base dose lower which is very hard work. Long road ahead so any prayers for that very much appreciated!
On Christmas Eve it was my 21 year myositis diagnosis anniversary. As I reflected on this, I thought about how 21 symbolises ‘growing up’ and ‘becoming an adult’ – which is exactly how I feel now with the myositis. I know it well, I know how it feels, what helps and what doesn’t, ways of adapting depending on my capabilities and I feel I know how to navigate it reasonably well in many different situations. I’ve learnt to live with it. Whereas the Addisonian condition I feel like I’m in the ‘toddler stage’ at the moment – it’s unpredictable, tiring and every time I think I know what I’m doing, something changes and I’m thrown another curveball! My hope is one day I feel the same about it as I do with the myositis – hopefully sooner than 21 years in!
This year was another year of learning to trust in the timing and having patience through the journey. I had my original MRI on 2 January and didn’t get the official all clear until 31 April when the ‘alien’ looking breast lesion was finally removed the week before. Though despite all the delays, I believe the day I had surgery was meant to be – right down to the staff on that day, the roommates I had in hospital and the post-op staff.
Through Jan to April there were a whole series of unfortunate events which made it quite the rollercoaster of a time. There were weeks waiting to be able to book in for tests and appointments, paperwork going missing, a sonographer not being able to find the right places to biopsy!?, booking in for more biopsies elsewhere only to have my booking ‘lost in the system’ and having to wait another week, having 9 core biopsies all up, being transferred to multiple hospitals because I was ‘too complicated’ of a case, ‘not being well enough to operate’ (though they soon realised this is as good as it gets!), having surgery postponed multiple times and breaking my foot walking normally at home! Throw in a few adrenal issues and post-surgery working incredibly hard to taper steroids for six months at snail’s pace (I’m talking 0.25mg or 0.5mg drops over weeks), only having to go back to where I started overnight as I got covid again! Ahhh!
One night in recent months I was just so exhausted getting my evening meds ready thinking how am I going to keep doing this, but there is really no other choice. I focus on what I can control and what helps. Taking it one day at a time. Four hours at a time sometimes.
Sometimes it feels like snails’ pace and two steps forward and one step back, but a little progress is better than no progress, so I keep going!
8. POLITELY ADVOCATING & EDUCATING
As I was debriefing my surgery and other appointments with one of my other Doctors she commented, “It is absolutely RIDICULOUS how much you are having to advocate for yourself!” Yes, yes it is!! Thank you! Knowing how to advocate for myself particularly about my Addisonian condition is vital as it can be quite dangerous and life-threatening if incorrectly treated or dosed, which is unfortunately what has happened many times in the past.
Living with rare diseases not many know much about, sadly not even medical professionals, you get used to the puzzled look on everyone’s face who reads your chart and it is quite amusing seeing the same, “What the!?” look on their face, as well constantly being told you are ‘extremely complicated’, ‘unusual’ or ‘unconventional’. I have a whole heap of stories I may share a little more about later (or feel free to ask me about that in person) but the most important thing in those situations is being polite as you really don’t get anywhere otherwise.
I am constantly advocating and educating about my conditions in many different settings, as well with well-meaning people in my life who don’t seem to understand or know that even though you do all the ‘right’ things, sometimes things still don’t make sense and the outcomes don’t match the effort. Knowing how to explain things in easy ways or analogies is helpful in such situations, as well as putting together a collection of good resources. Letters from my Specialists is important in medical settings. Which brings me to my next point – paperwork.
9. PAPERWORK
I’ve learnt over the years to be super organised when it comes to medical paperwork and making sure I am prepared for many different situations. It all comes from plenty of experiences – I don’t want to share too many stories here as it’s not exactly helpful but let’s just say it’s amazing how much medical admin you do as a patient!
The best tip I can give is to create a ‘Med Cheat Sheet’ of all important info. This saves everyone a whole lot of time and makes everyone’s life easier! Mine includes all my personal info, medical conditions, allergies, medications/doses/times of day I take them, a list of all my Specialists and Drs and emergency contacts – there’s nothing worse than lying in Emergency spelling out names!
I also make sure I get copies of everything I can in terms of scans, results, reports etc as it’s amazing how often these things aren’t transferred. I also have printed out a number of good resources I’ve found over the years about my various conditions, letters from Specialists and I keep all this in a folder I take to all appointments with me.
The Specialists especially love the ‘Med Cheat Sheet’ which saves so much time in appointments – I may have even been called the ‘Perfect Patient’ by a Specialist once hehe!
10. POO PEP TALK – This brings me to my last point – having a laugh in the tough times!
One such time was one night while I was cooking dinner, the emotion overwhelmed me. I could usually manage to keep it for when my children weren’t around but this particular night, it just overwhelmed me and I burst into tears.
My then six year old daughter came up to me and asked, “What’s wrong Mummy – why are you sad?”
I said, “Oh I’m just feeling sad because I’m not feeling well. I’m sorry for crying. It’s not your job or responsibility to cheer me up, it’s ok. I’m ok. I’m fine!”
As I sat down on a dining room chair, she came closer and gave me a cuddle and then she proceeded to tell me, “Don’t be sorry Mummy! All emotions are ok – happy, sad, angry, scared. Just imagine when you’re not sick anymore Mummy and imagine how good life is going to be!”
She continued with a hilarious analogy that took me a bit by surprise. “Mummy, it’s like when you do a poo – no one wants to do a poo, but you feel heaps better after you do one. It’s like that – so you just need to think about how good your life is going to be when you’re not sick anymore!”
I couldn’t help but burst out laughing amongst the tears! What a hilarious analogy but it was so brilliant!
After that even the thought of it made me smile and giggle and took the seriousness out of the situation and, “Just think of the poo!” was a common phrase in our home in the months after.
So, my encouragement to you whatever you may be going through… “just think of the poo!”
“Do you remember me when I was a baby!?” my son used to ask me at three years old. “Of course!” I’d reply, though at the time I didn’t have anything tangible to show him.
Organising my children’s baby photos was a job that was weighing heavily on my mind. I felt so overwhelmed at even the thought of it and the special memories and photos were continuing to accumulate. I had to find an easy solution – and fast!
I wanted a way in which my children would enjoy looking through the photos, as well as a place where I could record special memories and details which I knew I’d never remember in years to come.
Then I had an idea – a poem photobook!
The idea came from a beautiful poem my mother-in-law wrote my husband and I for our wedding day of our journey up until that point, which in our newly married days I had put together along with photos in a photobook. That got me thinking about similar poems I had written for my Mum and Nana the years before, as well as one poem in particular that my Nana, a keen writer herself, had written about her many grandchildren and our unique qualities.
What a great idea – I could do the same for my own children as a way of capturing and recording the memories in a meaningful and fun way!
So, the poem photobooks began! They contain all of the special details about my children’s lives – their birth story, newborn days and every stage thereafter, their interests, personalities and funny phrases they have said. I’ve included photos, their artwork, awards, handwriting samples and snippets of funny stories they’ve written.
But you might be thinking, how on earth do I remember everything for the poems? Well, the truth is I don’t. To keep track and up to date, throughout each year I add any details to an email to myself and once a year I consolidate it all into a long rhyming poem and gift it to the kids on their birthday.
I have found writing the poems has really helped me appreciate my children’s unique qualities and personalities, helps me appreciate the little moments and reflect on how much they have learnt, grown and changed throughout the year. It’s great having a snippet of their entire lives captured in one little book.
I was quite behind on the photo side of things which felt very overwhelming but knowing how important it was, over a few months I slowly chipped away at the 19,000 photos on my phone for their updated editions. It’s more of a chapter book now with each book already containing around 100 pages each and they are only 7 and 8 years old! The latest editions are super cute at 15×15 size which I just love.
I have also created a larger sized family poem photobook for my husband of our family memories together (which is next to update!) and a couple of years ago I put one together for my parents and siblings of my own childhood, containing some classic 90s family photos and included all of the funny family stories that have been repeated throughout the years.
It’s exciting to think of my children’s 18th and 21st birthdays when all these little memories and funny stories of their childhood are recorded for them to look through, which I’m sure will come around faster than I can imagine. I’m already realising how quickly they change and develop and that cute phrase I felt like they were saying three months ago, was actually three years ago! How!?
It’s a great feeling having the latest editions up to date and I look forward to seeing what are in the future chapters. Now if I’m laughing at something the kids have said or done, they’ll smirk and say, “Well, I guess THAT’S going in my poem then!?” Yes, yes it is!
Welcome to Organisation Mimspiration! Your place for all things organisation, faith, family life, chronic illness and creativity!
I’ve had this blog on my heart for a really long time, but the events of this year gave me the final push to actually bring it into fruition which is all very exciting (and slightly terrifying all at the same time!)
I hope you’ll find a little mimspiration, find some things of value here and I’m looking forward to learning from you too!
mimspiration.com 