Graded Exercise Therapy.
For some sufferers of CFS/ME this brings to mind painful experiences where they have been’encouraged’, by healthcare professionals with limited understanding of the technique, to push through their limits and do more, ending up with crashes, flair-ups, setbacks and pain.
Although the end-goal of Graded Exercise Therapy (GET) is to increase your energy levels and stamina; initially it is about doing less. I will go into more detail about this in a later post.
When I was diagnosed with CFS/ME, I was lucky enough to be based in Bath and was referred to the Adult CFS team at the Royal National Hospital for Rheumatic Diseases where their OH (Occupational Health) team supported me through the process I will outline below (although I have somewhat adapted it to suit my needs).
This Link provides a list of UK specialist support teams for Adults and Children with CFS. I would strongly recommend trying to get your doctor to refer you to one of these teams for specialist advice, support and guidance. If you are in the US, this link might be useful.
G.E.T. The Right Tools
These are quite simple: you will need a ‘log-book’, a pedometer and you.
Log Book: throughout the use of GET to improve your stamina you will need to maintain an ‘Activity, Rest and Sleep Log’. This is basically a diary documenting your activity levels over 24 hours. Whether you want to use a handwritten diary or a spreadsheet to record this is up to you.
Personally, I used a combination of both: during the day I kept a handwritten note of what I was doing and then updated it every couple of days into a spreadsheet.
I found it easier to detect patterns in my activity using the spreadsheet, both visually using conditional formatting to colour code the activity as well as daily, weekly and monthly averages. Using the spreadsheet to perform these calculations is especially useful if you suffer from the cognitive impairment elements of CFS which I did.
The conditional formatting allows single letter entry for each of the energy levels used: High (H), Medium (M) and Low (L) energy activity as well as Rest (R) and Sleep (S) and each ‘cell’ relates to a 30-minute block of time. If you would like a copy of this spreadsheet, click here.
Pedometer: Although my introduction to GET did not include a pedometer, I found the addition of this very simple tool was invaluable. I am on my second SILVA pedometer and a selection of these can be found here, although you may already have your own or prefer a different make.
For at least two weeks from when you start, keep track of what you are doing when, without any effort to do more than you are able to, in your log book/spreadsheet as well as keeping notes of your daily step count as well as any notes on how you are feeling.
It is very important during this initial phase that you carry on ‘as normal’, insofar as you are not trying to push yourself to do more than you feel able to do or go beyond when your body is telling you to stop (excluding any medical emergencies, outbreak of war, the zombie apocalypse – obviously).
Make sure you are honest with yourself: when I first started doing this I only managed a maximum of 500 steps and a few hours a day of anything more than ‘low’ energy activity.
This is another alteration that I made to the basic activity categories on the activity log I was introduced to: it only had ‘high’ and ‘low’ energy activity, together with ‘rest’ and ‘sleep’. I added the additional category of ‘medium’ energy activity because some tasks that were ‘low’ energy activity, but carried out on the computer, required more energy. It also gave a greater illustration of my energy usage.
“So.” I hear you ask “what activities are in each of these categories?” That is an excellent question. The activities contained in these are very much dependent on you, on how much of your energy it takes to carry them out. Below is a guide based on my experience:
Sleep: fairly self-explanatory – you would think. For the most part, sleep is sleep. However, I did go through a phase where I was having dreams where I was fighting for my life and woke up more tired than when I just lay there meditating all night, too scared to sleep in fear of the dreams. This nightmare-filled sleep was more like ‘high’ energy activity. Therefore, if you have differing levels of sleep you may want to sub-divide this category.
Rest: There is only one definition for this category – when you are doing something that relaxes your body, but are not sleeping. This could be listening to meditation, praying (if you are that way inclined), stroking a pet. All-in-all, something that lowers your heart-rate and relaxes your body.
Low Energy Activity: Something that requires little energy for you to carry out but requires active participation, like: listening to music (other than for meditation), listening to the radio, reading a book, sitting up in bed.
Medium Energy Activity: This category requires more energy expenditure than low energy activity but does not raise your heart rate. Examples could include: reading an article online, updating/reading Facebook, reading a text-book, having a conversation. Depending on how you are doing, this could also include a slow, short walk (i.e. between rooms).
High Energy Activity: This category can mostly be described as any activity that raises your heart rate due to physical or emotional exertion.
Notes on Activity Levels:
- Do not discount energy expended on emotions, these can often be more draining and detrimental to your energy levels than physical activity
- As you progress with GET the activities within these levels may change slightly as your symptoms improve, for example: having a conversation may well move from ‘medium’ to ‘low’ energy.
- Keeping notes on how you feel or what symptoms are flaring on a given day can be very useful.
What This Log Will Tell You
I will get in to this in more detail in a later post but this log will provide the data needed to work out your average daily activity targets.
Post Exertional Malaise (PEM). This term relates to the quirk of CFS/ME in that you do not always suffer the fall-out from over exertion on a ‘good’ day immediately; there is often a day or two delay between exertion and flair-up (I will go into more detail on the dangers of good days later) and keeping this log can help to identify your PEM interval between activity and ‘payback’.
Do let me know if you have found this post useful, or if you have any specific areas you would like me to cover in this series on Graded Exercise Therapy.
The techniques outlined in this series are not the product of any official training or medical qualifications, they are simply the benefit of my own experiences through dealing with CFS/ME and using GET to aid my recovery.