Growing up with Myositis, my life has meant constantly adapting to the changes Myositis has brought over the past 20+ 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 Myositis.
I don’t know about you but I’m constantly looking for ways to adapt my lifestyle and make the most of life with Myositis. We’re all unique in our approach and may all be at different places on our Myositis journey, but I believe we can still learn so much from each other wherever we’re at, so I’m curious, what works well for you? I would love to hear your best tips in the comments below. Here are a few of mine to get us started…
1. PRIORITISE REST
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 life 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 an afternoon nap everyday that I schedule my day around – no matter what. This 2-3 hour nap and rest time gets me through until bedtime each day. Like many others with Myositis, I also rest frequently throughout the day and maximise when I have the most energy for errands or appointments, making sure I schedule in rest time afterwards.
2. FINDING THE SHORTCUTS
I try to have a place for everything in my home so it’s easier to maintain and my family are involved in the day-to-day running of the household so it’s more of a team effort. I focus on what is the best use of my energy, how I can best contribute and what is sustainable for me in the long run.
In terms of parenting, I’ve learnt to do the same. I primarily focus and invest in the activities I am able to do more easily – the arts and crafts, music, reading, puzzles. I get creative and come up with active games for the children where I am able to participate in some capacity, while I sit down and rest.
I also look for the easiest way possible to do things. I sit down to get ready in the mornings, lean my arm on the bench 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 groceries or laundry baskets from the garage, often sit down while I hang my clothes on a clothes rack instead of the washing line and so on. I’m always looking for shortcuts to make life with Myositis easier.
3. WEEKLY GUIDE
I have found it helpful to break my week into smaller, more achievable goals and have just one main focus each day. This way each small goal contributes to a larger weekly goal, gives me variety in my days and is much more sustainable for me in the long run. ‘Guide’ being the keyword here, meaning it’s flexible. If I don’t feel up to doing something one day, I try again another day. This is my guide –
Meal Prep Monday – Cut up veges for the week.
Tidy Up Tuesday – Do a little clean if I’m up to it (wipe down bathrooms) and a little tidy up. I also have daily tasks I do every day to maintain the house, like stacking the dishwasher and a load of washing.
Work Free Wednesday – No housework. I try to do an activity with my children and relax with a cup of tea!
Thoughtful Thursday – Do something nice for someone else – spend time with someone, make a phonecall, send a care package, card or gift, or send a message to let someone know I’m thinking of them.
Family Fun Friday – Do a fun activity with my family – perhaps some painting or craft with my kids or watch a movie together.
Sleep in Saturday – One of my favourite days!
Self-care Sunday – Listen to podcasts/Church online, spend time with family, read, paint, watch movies and sleep some more!
If you like my Weekly Guide, feel free to use it or have a go making your own. You’re welcome to share yours in the comments below.
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. It’s great having food ready for lunches, smoothies and at dinner when I’m too fatigued and sore to stand and cook. When late afternoon comes, it’s as easy as putting some vegetables on a tray (I don’t use oil or salt on them) 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. My husband cooks on the weekends and has a different repertoire of food, so we still have a lot of variety in our diets.
I do all of my grocery shopping online and I created a master grocery shopping list where I can just tick 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 what to eat.
5. HOUSE MANAGEMENT AND MEDICAL FOLDERS
The Myositis life often involves extra medical appointments, keeping track of medications, pathology forms and scripts, as well as Myositis itself, so at times I have felt very overwhelmed by it all. One thing that helped me was creating two folders – a house folder and a medical folder.
The first folder is for anything house or family related. Grocery shopping list, meal ideas, things we would like to do around the house, our family goals, plus a calendar and a to do list broken down into smaller, more manageable tasks.
This consists of any recent relevant results (the rest get filed), scripts, pathology forms and in the front a medical information document. I keep a list of any non urgent questions I would like to ask at my next appointment, as I usually forget once I’m there. I also track my medications on a calendar, so I allow enough time to order before I run too low.
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. It’s also been helpful to give a copy to any Specialist or doctor I’m seeing so they have all the up-to-date information. It contains:
- My personal details.
- Medical conditions, allergies/intolerances, medications with dosages and what times of the day I take them (including any vitamins or supplements).
- Details about specific medical situations.
- My specialists and 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.
7. MEDICATION BAG
I’ve created a medication bag out of a bright cosmetic bag with daily medications, plus a couple of extra important medications, vomit bags and medical information. I can grab it in a hurry if I need to and it is also a great size to take if I’m going on a day trip out of town to visit family. I often set reminders on my phone throughout the day so I remember to take medications on time.
8. TIREDNESS AND 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 I find that lifts my mood, I’ve journaled a lot over the years and more recently created a folder on my phone of quotes and photos that encourage me, as well as inspiring and funny chronic illness ones to have a bit of a laugh and most of all remind me, I’m not alone in it. I’ve also recently joined an online support group with others with Myositis, so it has been incredible talking to others who can relate.
9. EDUCATION AND WORK
For me, this has probably been the hardest and most frustrating part of living with Myositis, especially being diagnosed so young. I have had to accept and adapt to the fact that my body has very different capacity with Myositis. An important lesson for me that I have been reminded of over the years is not to place my identity or value in my productivity or what I do.
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 that worked well when I was able to manage working part-time, was splitting my hours over three days instead of two (Mon, Wed, Fri) and working more manageable amount of hours per day (most times maximum of 5 hours). I would nap for a few hours in the afternoon when I got home each work day and sleep and rest the whole day 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 haven’t been able to work (and Myositis and all it involves feels like a full-time job in itself!), I’ve found meaning and purpose in other things, such as art, blogging, Church groups and volunteering 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, encouraged me to think of others and 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. I still have one or two long-term goals I’d like to achieve in my lifetime but in the short term, the past few years I’ve kept it simple by choosing some areas of my character I would like to grow in, with one main focus for each year.
This year it’s ‘Strength’. I have a big year ahead healthwise and I need all the strength I can get, not just physical strength but internal strength. So I’ve been thinking on how I can grow to become a stronger person on the inside.
Here’s what I’ve come up with so far:
- Reflect on how far I’ve come and what I’ve come through already as a reminder I can do it again.
- Focus on taking life one day at a time.
- Quotes, scripture and books – Create an album on my phone of inspiring, encouraging quotes and scripture about strength and find books to read that relate.
- Music and podcasts – Find uplifting songs and podcasts about strength to encourage me.
- Support – Regularly check in with my close family and friends, my medical and support team and commit to monthly peer support through MSU with others with Myositis.
I WOULD LOVE TO HEAR FROM YOU
I am so looking forward to hearing your best tips in the comments below on how you live your best #MyositisLIFE.