What activity management means to me in dealing with my CFS/ME

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)


 

If you enjoy this post and found it useful you might enjoy:

Or for more CFS/ME related posts check out my CFS/ME Index

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