TIP 1: Accept help
Ask your partner, friend or carer to help you make a list of friends and family and what you could ask them to help you with. Some examples are:
- Shopping
- Buying the pet food from that supplier a couple of suburbs away
- Chopping up ten onions and freezing them so you or your carer don’t have to
- Picking up hired equipment to save you the delivery fee
- Cooking individual serves of meals for your freezer
- Taking your dog for a walk, help you with “admin”
TIP 2: Plan your day before you get out of bed (or the day before)
Planning your day is so important.
It will help you protect yourself from yourself, by setting realistic expectations (which in the beginning might be as simple as “get out of bed and sit in a chair in the lounge room”).
A plan might also help your partner or carer understand where you’re at, say yes or no to visitors and get used to their new routine.
TIP 3: Get a trolley
An attractive, strong, tiered trolley light enough and the right height for you to push from room to room, even if you have a stick or use a wheelchair is good:
- as a place to put a glass of water or cup of tea, irrespective of where you’re sitting
- to hold a box of tissues, your phone, iPad, notebook and pen or a diary
- to carry small therapy items, you might use regularly
- as a spot for headphones for use in meditation or listening to music
TIP 4: Be kind to yourself and take one day at a time
When you get frustrated, remind yourself that you’ve had a major life changing health event! If you feel like there is too much to think about or worry about, you’re right!
Try to take one day at a time, especially after a stroke, where your situation and capabilities will change (sometimes daily).
TIP 5: Establish your “Command Centre”
Nab a table or desk which isn’t used by anyone else, or for homework, meals etc.and you can have a spot where you can keep appointment cards, bills, forms etc. Use shoe boxes, trays or jars to keep stuff easily organised.
This might also become the spot where you do table-based exercises. Ask someone to help you set this space up if you’re not able to yourself. You’ll be increasingly glad you set up a “go to” spot when you or your carer are looking for something
TIP 6 Put a sign on your door when you need quiet time
Ask someone to make you a couple of laminated signs that you can use attached to your door with Blutac, gentle things such as “sorry, I’m asleep” etc.
This will encourage visitors to pre-arrange visits around how you’re feeling and whether you’re up to the stimulus of visitors.
Encourage your partner / carer to say “how are you going? Is it time for a rest?” when they know that the visit has been long enough.
TIP 7: Abandon environmentalism temporarily
Skip separating and composting your food waste for a while; borrow a dryer or use the one you usually leave for emergencies in order to make life simpler.
Taking one bag of rubbish to the wheelie bin by wheelchair or using a stick is enough.
If it’s winter, use the heater to dry those clothes on the airer, or to keep you warm and snug so you can exercise or meditate.
If it’s summer, excess heat can drain someone suffering post-stroke fatigue, if you have one, turn the air conditioner on.
TIP 8: Meditate, nap, close your eyes, rest regularly
Many people will be telling you to: “keep motivated”; “move it or lose it”; “it’s important to keep up with your rehab exercises", and all these things are true, but not if not balanced with rest and repair.
Meditation and mindfulness are good for our minds and bodies, especially after a stroke when your brain is busy trying to make sense of how to move one toe and you feel like you have constant jetlag.
Each day with post-stroke fatigue can feel like a marathon, go easy on yourself and stop throughout the day to rest, meditate, nap, or listen to birds in the trees outside with your eyes closed.
You have nothing to prove to anyone else and any health professional will tell you the best way to manage fatigue is by finding YOUR balance (which will of course change over time).
TIP 9: Have a partner (or partners) in crime
You need to gather your peeps, a team of people who’ll be there for the long haul and who can help you by doing some of the most important stuff for you, or with you, such as:
- be your nominated person who can talk to Centrelink for you
- buy you clothes you like that you can physically get into
- pay bills for you or talk to work on your behalf
- organise the childcare or set up support services or equipment
You need people with confidence and good organisational skills, but people you can rely on to do things the way YOU like them done, or your partners in crime could become a liability!
TIP 10: Talk about what you’re feeling
It takes a lot of energy to hold on to pain and grief. Energy you need for other stuff.
The experience of stroke can change your life dramatically. Your sense of self, perhaps your ability to communicate, to swallow food and drink, to sit in a chair, stand and walk, open your eyes or see clearly, read, go to work, hug your child with two arms … are gone or changed. On top of that you’ve had the experience of emergency treatment, hospitalisation and rehab.
So, talk about or in some way express how you’re feeling to your family and friends. It will get lighter as you share, you don’t need to do this on your own.
This is the beginning of your new life but take the time to heal!
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