Pacing, Planning & Pre-Cautionary Rest ~ Managing M.E

{This is an updated & more in-depth version of a previous post so please be aware that this is a long post. I had to take numerous rests, over a number of days while writing this post but I wanted to be thorough. So it is advisable, especially if you have M.E, to pace yourself & take rests while you slowly read through this}

Paper with different coloured writing on it &
a mirror reflection the background.

I know pacing & planning can seem a little daunting & feels like a lot of work! However, it is such a beneficial factor to managing your M.E symptoms, that learning how to do it, really is worth it & will help you in the long run. For anyone not familiar with these terms, it's the process of writing out & planning your days/weeks/months to help pace & monitor your energy levels.

My aim for this post is to help anyone who may be newly diagnosed & is looking for a way to manage their M.E, anyone who wasn't able to attend a specialised M.E Clinic {that's where I was taught this} or for anyone with M.E in general who feels they needs to rethink their activity level & may be stuck in the "Boom & Bust" cycle.

Here's a little disclaimer before we get started: I am not claiming to be an expert or specialist on this subject. Even after 6 years of diagnosed M.E, I don't always stick to my pacing & planning & my body definitely tells me when I need to get back to it!


Step One ~ Filling in a Week to View Sheet:

First of all you need to see where changes need to be made. The following will help you find out what your high energy activities are, if you need more or less rest in between certain activities, & if you need to make small or big changes to your day/week/month as a whole.

I use physical paper/planner & pens for all parts of my pacing & planning but you could do all this digitally as well with either a spreadsheet or your phone calendar, if you prefer.

Here's what you'll need:
  • A week to view sheet. You can make your own in a Spreadsheet App/Software, like Excel, Numbers or Google Sheets. Along the top put the days of the week & down the side put the time, starting with 6am through to Midnight. Then if you prefer, you can print it out. Alternatively, drop me an email via the "Contact Me" in the side bar & I can send you the one I have which you can print out. {Dates are not important}
  • Highlighters & a Black Pen: You'll need three colours of highlighters ready for Step Two. The black Pen is to fill in your sheet. If doing this digitally, keep the text black to start, then you'll need to change text to from black, to Red, Yellow or Green {you'll see why in Step two}
Once you've got your week to view sheet, starting with black pen/text colour fill out your week. Make sure you pick a week that you have no added extras, like an appointment or special outings that don't happen each week. For this to be most effective, you need to see an outline of a normal week, it'll be easier that way to judge your energy levels for each thing you do. Also not starting the week with PEM from the previous week would be beneficial as well.

You don't have to be too accurate with the times, just with what you're doing. I found the best & most accurate way to do this, is by living the week & adding in everything as you do it, {this is why using a paper copy is probably easier} that way your starting base will be more accurate.

Things to Include:
  • Wake up times, meal times, shower/washing times, bedtimes, Medication times.
  • Activities you may do like reading, working {if you're able} watching TV etc...
  • Any rest or nap times.
  • Basically EVERYTHING you do in a week needs to be written down. 

At the end of each day, you also need to make a note of how you feel symptom wise, how severe any Post Excursion Malaise you may experience is & also how you slept ~ how many hours slept, if it was a broken night sleep or painsomnia/insomnia.

Two images showing the week to view sheet. One is Blank. One is filled in with activity highlighted in different colours.

Step Two ~ Grading Activity:

You've reached the end of the week & you've a filled in your weekly sheet. Now you need to go through your week & taking your highlighters or changing the colour of the text, decide which activities you have done that are either High, Medium or Low energy.

  • Red/Pink: High Energy. Activity that takes the most of your energy.
  • Yellow: Medium Energy. Activity that takes a lot of your energy but maybe not all of it.
  • Green: Low Energy. Activity that takes some energy but no bed rest after may be needed.

This step can be quite eye opening! {I know it was for me!} It'll likely show you where you are maybe wasting energy or that you're doing too much on one day & using up all your body's energy. Keeping a note of your sleep may also highlight that you need to change up your nighttime routine to try & help you get more sleep. This can also make you realise that you need to take yourself back to your lowest baseline of activity to allow your body the extra rest days it needs to cope with anything you are asking of it.

Step Three ~ Planning Your Weeks/Months:

So now you have a better idea on where your precious energy is going & where you may need to pull some energy back from. You can now start planning out your coming weeks/months, making yourself a routine that best benefits your M.E, especially setting yourself a bedtime. Personally I do this on a monthly basis first & then break that down into the weeks of the month.

Here's What You'll Need:
  • New Week to View sheets {I made myself a years worth} with the "Week Commencing" Dates written in the top corner. Digitally, you can make a new spreadsheet for each week or use your phone calendar.
  • Alternatively you can use a proper diary or planner with Monthly & Week to view pages. 
  • Red Pen or Text for High Energy Activity.
  • Yellow Pen or Text for Medium Energy Activity. {I used Orange as its easier to see}
  • Green Pen or Text for Low Energy Activity.
  • An extra Pens/Text colours of your choice for Bedtimes, Rest periods & Pre-Cautionary Rest Days. {I used Purple for all of them but you could use different colours for each}
So you've got everything you need, now lets go through filling it in...

Pre-Cautionary Rest & Bedtime:

A good place to start is by adding in your chosen Bedtime & Pre-Cautionary Rest Days. The latter is basically bed rest days in which you give your body a full days rest to help you cope with whatever else you are doing in the week. Personally, I have Monday, Wednesdays & Fridays as my dedicated Bed Rest Days, you can have more or less depending on the severity of your M.E.
  • With your chosen colour, simply write "Bed Rest Day" on the days you have chosen for this.
  • Write in "Bedtime" in your chosen time slot for each day.

Planning Main Activities:

Now it's time to add in any activities that you do week in, week out; for example showers/bathing, meal times, when you get ready for bed. These activities are your basic needs & work or household  related activities {if you work or have household chores to do. Personally, I will add in any photo editing, writing or maybe even a little back garden outing}

When adding these in remember to colour code them using your original week to view sheet:
  • Red ~ High Energy Activity
  • Yellow ~ Medium Energy Activity
  • Green ~ Low Energy Activity

Pacing Activities:

As you plan out your week & add in your activities, you need to start implementing some Pacing. You can do this by taking a High or Medium Energy Activity & seeing if you can break it down into smaller steps staggered over 2 or 3 days. It's also good to limit how many High/Medium Energy Activities you do within a week.

To get the most benefit out of your Bed Rest Days, try to keep any activity, even ones you can do from your bed, to Low Energy Activities. Though not a low energy activity, I choose to shower on my Bed Rest Days so I'm not doing two or more High/Medium Energy Activities in one day.

Rest Periods:

Now your week is taking shape & you are able to see what you've got planned to do for the week. The final step is to bracket each activity you are doing, especially High & Medium Energy Activities, with periods of rest.

Let's use having a Shower/Bath as an example:
  • You have set your Shower/Bath time for 4pm. You have likely colour coded this as a High or Medium Energy Activity.
  • In the 3pm/3:30pm slot write in "Rest" in which ever colour you have chosen for tracking your rest times.
  • Repeat the above in the 4:30pm/5pm slot {depending how long your Showers/Baths, followed by drying & dressing takes}
{Of course, like myself, many of you will likely need to sit for a little while straight after your Shower/Bath before getting dry, putting clothing on & maybe doing your skincare.}

Balancing out each activity with rest & relaxation can help your body cope a little better with whatever you are asking it do. It can also help, if only in a small way, to control the Post Excursion Malaise that comes after ever single activity you do, such is the nature of M.E sadly.

Step Four ~ Bedtime Routine:

The final step to all this is to make yourself a Bedtime routine that will hopefully help you to get some better nights sleep. Even if you struggle with actually sleeping for a solid 7 ~ 8 hours a night, having a routine to help you relax & rest at night, will still be of some benefit as it's likely the time you'll get a better quality rest than during the day. Also starting it a good couple of hours before your allotted Bedtime means you hopefully won't completely run out of energy before the day ends.

On my Bed Rest Days, my bedtime routine actually starts after my 4pm Shower. I get in clean pyjamas, do my nighttime skin care, have dinner, get back into bed & maybe watch some TV or check my social media. Then at 9pm, the TV goes off, the phone & iPad is put away & I pick up the book I'm currently reading & escape into it until around 10pm ~ sometimes a little later depending on what I'm reading, though I'm slowly getting better at stopping in the middle of a chapter. By 11pm at the latest my light is off & I lay with my eyes closed.

On my none Bed Rest Days, when I've had the afternoon downstairs, I'll make my way to bed after dinner around 6 or 7pm, do my skin care, get my sleeping pyjamas on & get into bed. Again I may watch a little TV or check Social Media but like the Bed Rest Days, everything goes off at 9pm & I read until 10 or 11pm.

Some nights I have no trouble falling asleep, others I sleep & wake almost every hour & then other nights I'm still awake at 3am due to high levels of pain. But I still try to not pick up my phone or iPad, {I actually have my devices set to "Do Not Disturb" from 9pm & "Sleep Mode" from 11pm so I can't access any non essential Apps} So I'll either read my book for little bit again or I'll go on my phone only to put an audio version of my Bible on low, which can often help me fall asleep.

Step Five ~ Something Fun:

Trying to manage your M.E can take quite a bit of work & some days it can get the best of you & all you want to do is hide under your duvet & cry, which is understandable & totally fine ~ I have certainly been there!

So, if you are able to, try to add one small activity a week that is something fun & benefits your mental health. This can be a hobby of some sort that you enjoy doing or a very small outing to get some fresh air either in the garden {if you have one} or a little further from home.

Step Six ~ Making Adjustments:

You've got your week all written out & you're beginning to get into your new routine. Just don't forget to still monitor your symptoms, energy levels & sleep habits for each day. Doing so will help you make any necessary tweaks if you find that you're exceeding your energy levels, or you need to give yourself longer rest periods before & after certain activities. Also you may find that limiting yourself to one High/Medium Energy Activity a week is more beneficial & may help with the severity & frequency of the Post Excursion Malaise you will experience.

Keeping a check on your energy levels will also help you know when you feel you are able to add a little something else to your week & see how your body copes with it. Starting from your baseline activity for a good few weeks, {doing mainly the basic essentials} then slowly & steadily increasing your activity is much better than crashing your body by trying to do too much, too fast. 

How you plan your week is entirely personal, what you're able to do is extremely personal, as is how you rate whether something is a High, Medium or Low Energy Activity. We all cope differently with different activities but please make sure you don't plan to do more than you can handle. Being realistic about your limitations can be difficult but it's essential to helping to manage your M.E in a way that is beneficial, especially if you're trying to get out of the "Boom & Bust" Cycle. Ultimately, listen to your body, you know what is best for you!

Side Note:

Any special events you are hoping to do, big outings or even having visitors, all need to bracketed with larger amounts of Pre-Cautionary Rest. So, maybe instead of just one Bed Rest Day before the activity, adding in at least one more Bed Rest Day should hopefully help you gain a little more energy for the activity. Then afterwards, give yourself a number of Bed Rest Days to help your body recover properly from the Post Excursion Malaise.

Also in this regard, it's important to make sure that whatever special activity you are thinking of doing, make sure it's worth. As I've mentioned & as I'm sure you will know, having M.E means experiencing Post Excursion Malaise for every little thing that you do. This will affect you mentally as well as physically, so when your symptoms are all worsening over a number of days from the activity, you want to make sure that you don't then regret whatever you have done.

A Month to view in a Planner
I know all of this is a lot to take in & can be very overwhelming. It can also take a lot of energy to do, but in the long run, it will be worth it, I promise.  Please remember that although sticking to your weekly plan is important, nothing can change the fact that M.E is an ever fluctuating disease & while Planning/Pacing/Pre-Cautionary Rest can help mange your M.E symptoms, it's also important to take each day as it comes. It's all a question of balance, remembering that Planning, Pacing, Pre-Cautionary Rest doesn't work in the same way for everyone. After all the years of doing this each Week/Month, I still have times when the plans go out the window: activities are cancelled & all I can do is lay in bed, resting my body.


Once you have been doing this for a while, you will begin to learn which activities are High, Medium & Low Energy & you may find that you no longer have to colour code them, along with your Rest periods. You may even find that just using a proper planner or diary in time is sufficient & no longer need your original weekly sheet. One with a Week & Month to view is best & if the day columns have the time of day included, then this would be even better.

A week to view in a Planner.
I'm now at this point. I use a planner from Personal Planner & I spend a little time at the beginning of each month planning out my Month. Then each Sunday evening when I go to bed, I review the week a head so I know what I've going on ~ appointments, a visitor coming or simply a week of no extras. Something else that I have found from doing this, is that it gives me a little a sense of purpose & structure, something that my chronic illness had taken away from me for a very long time. Personally, I have always thrived from having a routine & even now having M.E, I've found it's no different & in someways, it's even more of a benefit.

I really hope this little overview into how to use Planning, Pacing & Pre-Cautionary Rest to manage your M.E has helped those of you thinking about doing it or have heard the terms thrown about but were unsure exactly what they mean or how to get started.

This week the M.E Association is discussing Pacing & M.E management over on their Social Media platforms. They'll be lots of great advice & tips to help you learn more about how Pacing is one of the best methods you cam implement for your M.E. They're on Facebook, Instagram & Twitter {Just search ME Association} & I really do recommend checking them out & giving all their socials a follow.

If you have any questions on this topic please leave me a comment below or send me an email. Or if you're already Planning & Pacing but do it in a different way, then feel free to also leave a comment sharing any tips on how you do it. While the method I have taken you through has benefited my condition the most, I'm always looking for any other ideas to help.

Hope you're all as well as can be & are taking care,

L x

Comments

  1. Thanks so much for doing this! Ironically, this seems like a lot of work to do, but hopefully it will be worth it.

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