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:

High	Medium	Low	Rest
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
Shopping
House work

 

Other ideas from my spoonie friends not including the above:

High	Medium	Low	Rest
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.

I talk about this process in detail in a previous post called: The Golden rules of CFS (Link) and is very similar to the spoon theory (Link).

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
Work p/d	High	10	30
Walk (15 min)	High	10	30
Driving new area (30min)	High	10	30
Dinner / Drinks	High	20	50
Quick food shop	High	10	25
Cooking/baking	Medium	10	30
Write blog p/h	Medium	10	25
Shower + Hair	Medium	10	30
Out for coffee	Medium	10	40
Driving locally (20min)	Medium	5	15
Making breakfast	Low	5	10
TV p/h	Low	5	10
Reading p/h	Low	5	25
Meditation	Rest	-5	–
Breathing exercises	Rest	-5	–

 

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:

	Monday	Tuesday	Wednesday	Thursday	Friday	Saturday	Sunday
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
Total Credits	95	115	60	100	100	100	95

 

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:

	Monday	Tuesday	Wednesday	Thursday	Friday	Saturday	Sunday
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
		Work 35
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
Total Credits	105	115	85	105	120	130	85

 

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!

Unexpected events!

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)

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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