Living with an energy limiting illness can be difficult in many different ways. Each person’s experience is different and you may experience additional symptoms. Also for some people they have more cognitive energy than physical energy or whilst others experience their energy levels the other way around. As well everyone experiences a varying severity in the limit in their energy levels, so these are just some general tips that I’ve found to be helpful that I want to share with you.
1. Learn to pace out your day
I use this colour code system on a day planner, or on my to-do list or I use the traffic light pacing list pad* to plan my day.
The key to pacing and with it being so visual I can see that if there’s a red task I’ve just done I know to follow it with either a green task or a rest period therefore I’m pacing myself and I’m not going to overdo it with my limited energy. I also know to limit the time I spend on a red task and when to do it in the day. If I do an orange task I know to follow it with a green task and then to rest and so on.
*from Stickman Communications © - they have some great pacing resources in their shop including a very user friendly little book all about pacing. I got this magnetic planner set from there too.
2. Do your most energy consuming activity at the time of day when you have the most energy
Work out when in the day you have optimal energy. This is different for everyone for me it’s early afternoon but for others it’s in an evening. Use this time when you have the most energy to do your most energy consuming activity or activities for that day but try to limit it to only one or two activities so you don’t over spend your limited energy.
3. If you’re getting tired STOP and rest
This is something I’m always not the best at doing and I’m always trying to tell myself not to do anything if I’m feeling tired. It’s easier said than done!
If you’re noticing that you’re starting to feel fatigued either don’t start to do any activity and just rest instead or if you’re in the middle of an activity and you’re starting to tire just neatly pack up (you can pack away properly another time) and just leave to go rest. You’ll perform better when you’re not feeling absolutely exhausted and if you do any activity whilst feeling utterly fatigued you’ll only make yourself feel worse.
When you rest either do a really low-level activity or what I do when I need to just stop and rest is lay in bed and listen to a soundscape.
4. Time your activities
Once you know your activity limit which will be trial and error I find it helpful to set a timer for 20 or 30 minutes to ensure I don’t overdo it and over exert myself which might impact on my fatigue levels crashing.
Another thing that I was told to do was on my to-do list put how long each task is going to task me to do, such as: put laundry on - 5 minutes, write to pen pal (my main activity for the day) - 30 minutes, call pharmacy - 10 minutes. By putting times on my to-do list it ensures I can fit in rest periods during the day as well as factoring the time it takes me to switch from doing the laundry to calling the pharmacy.
5. Use aids, equipment and gadgets etc.
Using aids, equipment or gadgets can help share the task and help reduce fatigue or help you keep going for longer and allow you to do more.
There is so so so much out there depending on your, your medical condition and your needs. From gadgets and pieces of equipment to use around your home through to mobility aids. A few examples could be using a shower stool to reduce fatigue when showering, I have many kitchen gadgets that help me save energy like my hands free tin opener, also different mobility aids from walking sticks to rollators to wheelchairs can help reduce fatigue - if you’re unsure about mobility aids speak with an Occupational Therapist or physiotherapist for advice on what is best for you.
6. Don’t be afraid to ask for help
Asking for help isn’t a sign of weakness, it’s actually a sign of strength. This could be asking for help from a family member, friend or even a professional.
It could be asking someone to help you change the sheets on your bedding to reduce your fatigue, or asking for someone to make your lunch for you, or a family member to wash your hair or to employ or ask social services for help and have a PA/carer to help you out. Other things could be to get a cleaner or dog walker or even if you have children give them school meals to save your energy on making packed lunches.