When you have a chronic illness like M.E which limits how much energy you have it does have a massive affect on your life and how you adapt your life to live in the slow lane. How much energy you do or don't have is very individual from person-to-person depending on their illness. For me my M.E is classed as being severe so generally because of this I have to make the most of what little energy I do have each day and this varies day-to-day depending on if I'm having a good or bad day and other factors such payback from something I've done. What little energy I do have is very precious to me so I have to be very careful and cautious as to where I spend and spread out my limited levels of energy. Since I became ill over this time I've learnt how to live with limited energy and how to best manage the energy I have each day.
What many people don't realise is that everything takes up energy from getting dressed, brushing your teeth, washing, watching a TV program, reading, listening to music, playing a game on your phone, any form of exercise. It isn't just physical activities that take up energy but mental activities too, even maybe something that brings up strong emotions may exhaust you.
This makes life pretty difficult as I don't know what kind of a day I'm going to have. Sometimes I can predict that tomorrow won't be so great if I'd done something that day that pushed my energy levels to it's limit but how bad the next day will be is a total unknown so it's hard to prepare for dealing with the following day.
Life with limited energy, whatever has caused that, is a challenge. Energy becomes something precious that you want to hold on to and you have to spend it wisely. This links in with Spoon Theory if you've ever hear of that?
I've found that regular rest periods throughout the day help keep my levels in check. Unfortunately reseting doesn't restore or restock my energy levels but it gives my body and mind opportunities an opportunity to pause which I find is much needed and I find the routine of alternating activity and rest periods help keep my energy levels in check, this is what I call my Daily Plan. Each day I have one main activity which I use my energy on doing; yesterday wasn't such a great day so my main activity yesterday was watching an episode of a boxset I'm enjoying. On a good day however I have more energy to do a bigger main activity. - I hope that makes sense?As well as my main activity I have low-level activity periods where I do activities that don't take up as much energy as well as spending my energy on washing, getting dressed, brushing my teeth, doing my hair - all the basics really which I do with the help from one of my PA's which make tasks easier and reduce my energy levels from crashing.
It's a very careful balance. Some other tools I've found helpful is pacing and activity management which is where my Daily Plan come in. Finding your own personal baseline is really important too, this generally involves working out how long you can do an activity for before you're energy levels drop and other symptoms flare-up. This baseline is different for everyone and may vary depending on the activity as well as if you're having a good or bad day.
My main advice to conclude this post is to see if you could do some work with an Occupational Therapist as I did to help you put together something like a Daily Plan. Take regular rest breaks; stop before you flop aka don't overdo it. Work out your baseline and put on a timer when you do an activity so you know when to stop. Learn about pacing and activity management including the traffic light system - Sickman Communications © have a great Pacing Pack which I have and I've found it so helpful including the traffic light post-it notes to plan my day and the Pacing book which taught me everything I needed to know about pacing. Write to-do list, this could be on your traffic light post-it notes, or on a list pad or on your phone (I love the reminders app on my phone). Also break tasks down so if you have laundry to put away do it in small stages, or ask for help - it's okay to ask for help; a helping hand can often save you some precious energy. Prioritise where to spend your days energy; if you're having a bad day it's okay to do very little - listen to your body. Finally since I've become ill I've learnt that things can be left to do the next day or week (unless it's super urgent and important).
