Naomi Gilchrist – Champion Blogger
Doing any sort of activity can be difficult when you have M.E. and everyone’s M.E. is different but here is some of my advice on how to make activities a little easier so hopefully they become more enjoyable.
Listen to your body
What is your body telling you?
Are you having a good or bad day, are your physically tired, cognitively tired, emotionally tired etc. ? All these things are important to listen to as if you’re physically tired and then go and do a physical activity you’re just going to make yourself feel even worse.
One of the things I find helpful is to switch tasks so if my last activity was more physically demanding (like getting washed and dressed) I’d switch my next task for something that is say more cognitive (like listening to an audiobook).This just gives different aspects of my body times to be active and times to slow down
The amount of rest you need totally depends on you. I’d say generally rest before you flop. For some you may need just the one rest period a day but for others
you may need a few rest periods to help you keep going.
Low level activities
Low-level activities are great for when you still want to do something but you mind and/or body aren’t quite feeling up to doing something ‘big’.
Low-level activities may differ from me to you but some suggestions include listening to the radio, a podcast or an audiobook, reading (a book, magazine or newspaper – I’d highly recommend The Happy Newspaper as a personal suggestion), colouring, journalling/bullet journalling, watching short YouTube videos, painting nails and doing nail art, mobile phone games or small handheld gaming devices(not ones that connect to the television) – that’s as many as I can think of and I hope I’ve listed enough variety for everyone.
Obviously all these activities are at different levels but most can be done laid down or, if not, sat up with your legs raised which is a nice restful posture which can help alleviate some M.E symptoms that you may experience like orthostatic intolerance. As a result low-level activities give you mind and body an all-round break and I strongly suggest, if at all possible, putting into your day breaks of one-hour (or two 30-minute slots)of low-level activity.
The traffic light system
Using Post-it notes, create a heading plan for the day. Split it up into three colours – green, orange and red (see below).This is a system that I find really helpful when I’m writing out my activities and to-do list for the day. I’m quite a visual person so seeing the traffic light colours helps me to plan my day and to do list in a balanced way for my body.
The traffic light system goes like this: Green = easy, Orange =okay, Red = challenging
Using this traffic light system, it can help you plan out your day and can help you more with spreading your activities out. You can read more about pacing and activity management in this blog post which goes into more detail about the traffic light system and how to best use it.
These handy post-it notes are available from the Stickman Communications ® store.
It is incredibly easy to get lost in an activity and then find that you’ve overdone it and you’re paying for it afterwards. One thing I learnt with my OT is how long I can spend on an activity before I reach my limit. This activity-time limit will be different for everyone and may also differ depending on the activity.
Working out your time limit is trial and-error. The best way I worked out my activity limit was to start small and build myself up. (This was a little different for me as at this time I was in a specialist unit for people with severe M.E.).
Generally how you work out your activity-time limit is start small
- five or 10 minutes or around there (wherever your M.E is at)
- and what I found helpful was setting a timer (which I still do) so initially do your activity for that shorter period of time and then after a few days or when you feel comfortable and can manage that time limit. Then you increase it a little e.g. from 10 to 15 minutes and continue to do so until you find a time limit that is manageable for you and you feel comfortable with and what feels comfortable and doable. So a time limit that doesn’t exhaust you, or flare up any of your symptoms, etc. Sometimes on your bad days your activity time limit may be less and on your good days it may be a little more but try to stick within your limit so as to avoid that‘ I’ve overdone it’ feeling and exacerbating your M.E.
Break tasks up
Breaking tasking up can make them easier and less tiring. Asan example when I’m blogging I don’t just write a post all in one go (that would be way too much for me!) so I just write a paragraph at a time. Behind the scenes of my blog is an organised chaos of draft blogs as I get ideas and start a draft blog to complete at a later date as well as to balance my blog out so I’m not just always blogging about health-related content.
Obviously not all tasks can be broken up, like cooking a meal, but where possible try to break tasks down into more manageable bits. This fits in with your activity-time limit (see above).
Braces and splints
If you have hypermobility it may help to wear braces of splints. For example when I crochet I wear my hand brace as well as some splints on my fingers to give my wrist and fingers some support and stability. This means that my joints don’t tire so easily so I can crochet for longer and it also reduces injury and pain.
Adapting your workspace
Changing your work space can make both activities easier as well as aiding you. For example if you’re doing an activity in bed using extra pillows or support
pillow like a V- or body-pillow to support you so you are more comfortable as well as supported. It may also be beneficial to invest in a fold-up bed table or a table that goes over your bed (you maybe able to get one of these from your Occupational Therapist) so that when you are doing activities in bed you have a better set-up for doing activities.
If you are working at a table, adaptations that may make things easier for you include a tilt stand for your laptop, a wrist rest either for typing and/or for your mouse mat, adapted mice (such as an ergonomic mouse),adaptive software such as voice recognition software, back supports and foot rests.
Adapting your work space makes tasks easier for lots of reasons; it may help to reduce pain, improve and support your posture and position as well as supporting your muscles and joints. This is all really important as some of these things are preventative so they help reduce and may prevent problems from happening such as muscle and joint pain.
This article originally appeared in the Spring edition of ME Essential