I have had CFS/ME for around 18 months give or take, and I can no means say that I am recovered (still on that journey!) but what I can say is that my symptoms and my functionality has increased ten fold.
I have gone from being house bound and being off work at my worst, only being able to be out of bed for short periods of time and with the help of my partner…. to the current day where I am able to work 3 days a week have something that resembles a social life.
So what has helped this change?
No I haven’t taken a magic pill (I wish!) although I do take a variety of supplements .
The key is managing this condition in the best way you can.
Activity management has been so key to my recovery and that of many of my spoonie friends.
However there is no one size fits all with these conditions at all; everyone has different things going on in their lives, children no children, work no work, and the list goes on!
So how do you work out your ever so illusive BASELINE, one thing that helped at the every beginning was to categories everything I did as either: High, Medium, Low, Rest or Sleep (Something I was taught at the the North Bristol CFS Clinic – Link)
Even if you are in perfect health it is best to have a balance. If we fill our lives with all mediums and high we are ultimately going to crash and burn even if you are fit and healthy (and we have an even lower tolerance for these activities)
But on the flip side if everything is all rest, low and sleep we are going to get bored, potentially depressed but defiantly despondent and are unlikely to progress.
Basically we need to find that magical thing called balance.
So how did I solve this very hard problem of finding this balance ?
First I want to caveat that I don’t always get this right, I still push and crash occasionally but 90% of the time I am stable, and most of the time where I push/crash it is because of a hell yes (Link), basically something I really want to do even though I know I will suffer.
Below I have summaries as best I can in the following 4 steps:
Step 1 – Categorisation of activities
I began by listing out all the activities you could possibly want to do now or in the future and popping them into to the various different categories, I viewed the categorises as being quite fixed so they would be the same if you were healthy or sick.
For me it would look a bit like this:
|Work||Cooking||Making breakfast||Meditation (Link)|
|Volunteering||Baking||Watching light TV/Films||Breathing exercises|
|Socialising: drinks, meals etc||Talking on the phone socially||Light hearted reading||Sitting out in the garden (doing nothing)|
|Aerobic exercise||Socialising: coffee, close friends over causally||Yoga/stretching|
|Driving-long period/new place||Writing blog||Bath with epson salts (Excluding showing)|
|Official phone calls||Personal care: showing, hair etc|
Other ideas from my spoonie friends not including the above:
|Paperwork||Listening to motivational talks/webinars||Stroking pets||Shavasana position|
|Childcare||Looking out window taking interest in woodland activities||Listening to calm music/wave sounds/sounds of nature|
|School run||Looking at pictures||Daydreaming|
|Dog walk||Texting||Autogenese training (Link)|
|Entertaining guests||Listening to music||Earplugs in/eye mask on and complete silence|
|Absorbing information||Colouring in mandalas|
Step 2 – Assigning credits/ spoons
So now we have worked out what is high and low, we need to do a little more to fit this into what we can do now.
This is what will change over time during your recovery process.
Basically I give myself 100 credits a day, which I can spend on any type of activity, the credits I give for each of the above has changes as I have progressed on my recovery journey as you can see below:
|Activity||Category||Credits Now||Credits a year ago|
|Walk (15 min)||High||10||30|
|Driving new area (30min)||High||10||30|
|Dinner / Drinks||High||20||50|
|Quick food shop||High||10||25|
|Write blog p/h||Medium||10||25|
|Shower + Hair||Medium||10||30|
|Out for coffee||Medium||10||40|
|Driving locally (20min)||Medium||5||15|
As you can see I can now do much more now than a year ago and hopefully even more in a years time!
But what you might find interesting is that several of my medium are the same credits as high or sometimes more, some it is due to the amount of time it takes, other times it is just where I am now.
Also with rest I now use take away 5 credits, as this then emphasises to me how much I need to do it on more busy days.
Step 3 – Plan both days / weeks
Ok so now we know what each of our activities are ‘worth’ for want of a better word, and we know we can use 100 p/d.
That does not however mean we have to use all 100 credits every day!
Planning is key especially when in the early stages, for the first year of doing this I would plan out my week in a diary split into AM, PM, Eve, and first began begin by writing in the things that were must do’s, things like work, school runs etc and then you can build your day / week around that.
A year ago a typical week looked as follows:
|AM||Breakfast +teeth 10||Breakfast +teeth 10||Sleep in||Breakfast +teeth 10||Breakfast +teeth 10||Breakfast +teeth 10||Shower 30|
|TV 10||Drive||TV 10||TV 10||TV 10|
|Shower 30||Work 1hr 30|
|PM||Lunch 10||Lunch 5||Lunch 10||Lunch 10||Lunch 10||Out for Lunch 40||Brunch 15|
|Blog 25||Work 1hr 30||TV 30||Walk 30||Bake 30||Meditation –||Sit in garden –|
|Meditation –||Drive 15||Meditation –||TV 10||TV 10|
|Eve||TV + eat 30||Nap –||Bath 15||Meditation –||Shower 30||Cook 30||Family dinner 40|
As you can see its not quite 100 credits a day, in an ideal world it would be but you need to be realistic there are some things you need to do on certain days which you have to do which will take you over by planning the week make sure that if there is a day where you go over like on Tuesday you have time to let your body recover by having lower credit says around it.
Step 4- Adjust over time
Bar my slow phased return to work (link) , I haven’t purposefully increased my activity in a specified way but my activity has increased hugely since a year ago, slowly but surely to something that resembles the following:
|AM||Played on phone in bed 5||Played on phone in bed 5||Played on phone in bed 5||Breakfast 5||Shower +Hair 10||Breakfast 5||Breakfast 5|
|Breakfast 5||Breakfast 5||TV 10||Drive 5||Drive 5||Shower +ready 15||Shower +pack 10|
|Blog 15||Get ready 5||Work 30||Work 25|
|PM||TV 5||Lunch 5||Lunch 5||Lunch 5||Lunch 5||Meditation -5||Sunday Lunch 15|
|Drive 10||Work 30||TV 5||Work 40||Work 35||Taxi/walk 10||Train 10|
|Food shop 15||Drive 5||Ready 5||Walk 5||Wedding + drinks 30||Tube/train 25|
|Mall 15||Post office +TV 15||Train/tube 15||Dinner + drinks 30|
|Eve||Dinner out 25||Friends for dinner 20||Dylan Moran 30||Drive 5||Train 5||Lie down -5||Walk+drive 10|
|Drive 5||Read 5||Drive 5||TV 10||Dinner 15||Evening do 40||TV+Dinner 10|
|TV 5||Read 5||Read 5||Taxi 5||Read 5|
You can see that I can do a lot lot more than I used to be able too, a week like this would have been unimaginable to me this time last year!
This week also included having to travel to a wedding with friends over the weekend which was a total hell yes!
You now have your nice week planned out all in perfect equilibrium but what happens if something unexpected happens you hadn’t planned for? Well check out my post discussing just that (link – coming soon)
If you enjoy this post and found it useful you might enjoy:
- 30 Things About My Invisible Illness You May Not Know
- How are you? The not so simple answer to that simple question
- Benefits of Movement for CFS/ME
- CFS/ME Triangle of Success
Or for more CFS/ME related posts check out my CFS/ME Index