By: Steph Cantrill
With lockdowns, restrictions, and the recent COVID-19 outbreaks, many of us have been spending a lot more time at home over the last two years. But how do we make sure we come out strong on the other side? This post contains a few suggestions – but remember, everyone’s different. You need to do whatever works best for you!
Changes to routine
Whether it’s underdoing or overdoing, changes to what’s normal for you can have a big functional impact. Our clinical health educator talks about polio survivors’ balance of activity and routine as like walking on a narrow ridge line – you don’t have much scope for movement before you really notice the impact. For others who don’t have disability or chronic illness, it’s more like walking on a wider path – big changes will be noticeable, but they can ride out little alterations to their routine without feeling it too much.
You might find yourself trying to “catch” up on all the things you missed out on – whether that’s exercise, social activity, hobbies, or even medical and personal appointments. But that’s probably not the best idea. It’s better to take it one step at a time.
You might want to prioritise, so that you don’t get too overwhelmed and try to do everything at once. Which of the things you’ve missed out on should come first? Which things can wait a while?
Time marches on
As well as recognising that changes to your routine will have affected you, it’s also worth noting that it’s been about two years. If you’re dealing with progressive changes due to Late Effects of Polio, it’s likely that things may have changed in that time anyway.
Here’s some research to explore that a bit:
- Loss of motor units and strength – a 2014 study found a 20% loss of motor units and 15% reduction in strength over 10 years among polio survivors.
- Changes in mobility – another 2014 study (possibly the same cohort?) found average walking capacity declined by 6% over ten years, and self-reported mobility reduced by 14%. But for almost a fifth of the cohort studied, walking capacity reduced by 27%, and self-reported mobility by 38%. That’s quite a big change.
- Reduction in activities of daily living (ADL) – a third study, from 2021, noted a reduction in ADL performance, including indoor and outdoor walking and eating, over a ten-year period. However, this study didn’t assess things like housework. Still, it once again shows us that things can – and do – change over time.
Two years isn’t much compared to a whole decade, but it’s not nothing. Because you haven’t been doing all the usual things you’d normally be busy with, you might not notice any reduction in function. But when you start to get back to doing all the things you were doing before, some changes might become evident. This is just something to be aware of – and something you might need to adapt to.
Reassess your capacity
As you start to get back into normal daily life, it might be worth taking stock of your current function, and making any necessary changes in response to what you’re able to tolerate.
Some people might get an assessment every now and again at a rehab facility or polio clinic. Here you can have a formal review of your muscle strength, fitness, walking etc. If that’s you, now might be a good time to make that appointment. (If you’re thinking it might be good to be assessed by a health professional who knows something about polio, try searching our health professional register.)
For a self-assessment of your capacity, an activity diary can be a useful tool. Here’s how it works:
- Write down all the things you’re doing over a week or two, and how long you spend on each activity.
- Rate your energy (or pain) levels out of 10.
- This helps you to see what you’re doing – and what you’re overdoing. The idea is that it gives a summary of what you’re able to tolerate.
This video explains a bit more about activity diaries, and here’s a sample:
This (hypothetical) person has written down what they did and for how long. I’ve categorised the activities into things that are fatiguing in red, restful in green and somewhere in between in orange. You’ll see their energy went up and down a bit, but they clearly overdid it and had to spend the entire afternoon in bed. We often refer to this as “boom and bust”.
As you see, this person spent an hour and a half gardening, even though they were pretty much spent after the first hour. Sometimes it’s tempting to just get things done and then it’s done. But you can pay for that, as I’m sure you know.
I will add that there will always be some things, like a major event or family gathering, that you might choose to prioritise even though you know it’ll exhaust you. That’s up to you, and as you learn your limits you’ll also learn ways of managing that – resting before and after, for example. But gardening can wait!
The activity diary can help you see where you’re overdoing it, and in what ways you might need to make changes. Once you know what you can tolerate, you can start to plan activity around your capacity.
If you’re just getting back into things after a period of reduced activity, remember to build up slowly. And remember – pacing means stopping BEFORE you feel like you need to. Don’t wait until you hit the wall!
Aim to alternate activity and rest through the day, and throughout the week. It’s easy to say, and quite hard to implement. But practice makes perfect!
Balance means doing not too much, but also not too little. Of course, every day and every week will be different, but look for a general routine that you can manage and maintain.
As you re-emerge into normal life, this might mean starting small, and working into doing a bit more each week until it’s a workable routine that you’re happy with – remember that it’s not about catching up on every lost activity all at once.
Plan your day and your week to some degree, to enable balance – alternating activity and rest (more on that below). Also, try to find balance by alternating the way they use your body – e.g. sitting, standing, moving. The aim is not to be stuck in any one position for too long.
Keeping doing – without overdoing
To help you find that balance, you can change the duration of some tasks. This can be especially true for tasks we enjoy.
For example, social engagements can be really tiring, and you might not feel it until later. The increased fatigue might make you want to say no next time – or, you might say yes and then end up overdoing it again.
How about shorter social engagements? You could try something like this: “I’d love to have lunch, but can we make it coffee?” or “I’d love to see everyone, but I’ll skip the movie and just come for dinner”.
Hobbies and interests can get put aside too – maybe they’re physically tiring, or maybe we don’t feel we have time. But rather than all or nothing, try doing a bit at a time. It helps to schedule activities, so you can prioritise the things you love doing among all the things you really need to get done.
Planning and scheduling
Above is an example of achieving activity balance through planning and scheduling. Remember, everyone’s tolerances are different – this one is based on the imaginary person from before. They’ve recognised that they were overdoing it with the gardening and falling into a boom-bust pattern, so they’re now trying to pace and balance.
That doesn’t mean they stopped gardening. This person loves gardening, so they want to continue doing it – but they’re doing less today, and spacing it out across the week.
The restful activities (in green) can be somewhat productive as well – just using your body differently. And you can balance mental activities with physical ones, and also with total rest. Some people need an afternoon nap, and that’s ok. It’s about learning what you need and incorporating that into your routine.
And for the less meticulous planner, here’s a more basic activity plan:
This person is still balancing activity and rest, but not planning it all to the minute. Still, you’ll see it generally alternates between something active and something restful. Remember, it’s about whatever works best for you.
Also, note that on Wednesday afternoon they do a bit more rest than usual – you can see two green activities in a row – because they’re going out for dinner with friends and they know that will be a fatiguing activity. But it’s a priority for them, so they’re working it out as best they can.
Adapting everyday tasks
Here are a few more suggestions for making everyday changes to everyday tasks, in order to save your energy for the things that are important to you. This is by no means an exhaustive list!
Where you can, use assistive technology to save energy and make thing easier. This can include:
- Shower chair and rails to make showering easier and safer
- A scooter or wheelchair so you can get out and about more without overdoing it
- Orthotic braces to preserve muscles and energy when you’re walking
- Electric lift recliner or higher chairs to reduce effort in your legs
- Raised garden beds to avoid bending
- Laundry and/or kitchen trolley to carry things around the house, groceries from the car etc
Consider other gadgets that might help:
- Robot vacuum
- Slow cooker, rice cooker etc
- Steam mop
- Self-propelled lawn mower
Sit where you can – this will save your energy and limit prolonged standing. Tasks you might be able to do sitting down can include:
- Chopping vegetables
- Showering (on a proper shower chair)
- Folding laundry
Avoid overdoing tasks – keep it simple! Take cooking for example – you can cook simpler meals, and even freeze leftovers to save cooking on busy days.
Get help if you need it! Don’t forget to accept those offers of help, or arrange services if you need them. The idea is to save your energy for the things you love doing!
Any lasting changes?
Can you think of anything that changed during lockdown or restrictions that you might consider keeping? Are you an online shopper now? Or could you occasionally do virtual social catch-ups still, to continue to see friends but without having to go out all the time?
We asked this question on Zoom recently and here are some things people intend to continue doing:
- Online grocery shopping
- Not overbooking myself
- Appreciating the simple things
- Not caring as much about hiding my disability
As we start to emerge back into the “real world”, now is a really good time to think about changes we want to continue.
- Don’t expect to just return to “normal” instantly
- Choose which things you want to do first
- Reassess so you know what you can tolerate
- Pace yourself and build up
- Develop a sustainable routine
- Prioritise what you really want to do – cut back on other things, or accept help (or use gadgets)
So what will you prioritise as you step into the “new normal”?