“Baseline”, “pacing” and other nonsensical terms people use as advice in the ME/CFS world

Rewind approximately two years ago, and I was sitting in a specialist physiotherapist’s office with her explaining that the only way to manage ME/CFS is to establish a baseline.  She rattled on and on about being ‘consistent’ and not ‘crashing’, ‘establishing a solid baseline’ and ‘pacing’ myself accordingly to avoid the inevitable ‘boom and bust’.  There were diagrams and graphs, pictures drawn, charts to fill out, timings to be kept to, rules to be followed and I remember sitting there thinking ‘I’m too tired to deal with any of this? How?!”  It was too much, it was overwhelming, and combined with brain fog (being a symptom I’d become so familiar with that my husband called me a ‘zombie’) I had no idea what was going on.

I left, took the train home, which was already more than I could do, and cried.  I was armed with leaflets and notes to read, and follow-up appointments to book. I felt helpless, I didn’t understand any of the terms, I didn’t understand what I needed to do and it was all so exhaustively huge – and what I did understand didn’t seem to apply to my life! I had a part-time job, kids, and responsibilities and I was somehow supposed to get my life to fit in the little boxes in the diagram she’d drawn and then I’d somehow be coping! It was one more thing to do.  And one more thing that I was sure I’d fail at.  So, I decided I hated her, and that she was talking shit, it wasn’t possible for my life, and that I didn’t need her!

But unfortunately, I was wrong. She wasn’t talking shit, she was right. And the only way I’d start to recover was by learning and accepting what she was telling me.

So to save you this rollercoaster, I will define as clearly as I can what the basics are:

Baseline

Nothing to do with the lines on the court in tennis, the baseline is a:

A minimum or starting point used for comparison.

In a nutshell, it’s what you can do without feeling any worse. It sounds simple and there are only three steps:

1. Write a list of what you can do every day without feeling worse – this includes all the tiny things eg brushing your teeth, watching TV, talking to your friend on the phone, and all the big things – walking around the block, reading a chapter of a book.

2. Write a list of all the things you know make you feel worse.  Now don’t go crazy and write about walking a marathon, or climbing Mount Everest, think hard and be honest. (Mine were things like going on day trips with the family, going a whole day without a rest, doing the laundry, cooking the meals, putting the kids to bed, concentrating on a computer-based task for more than 15 minutes etc).  You won’t like this list, you won’t like admitting it to yourself, but you need to accept what is currently making you feel worse.

3. This is when it gets difficult. For two weeks do not do anything from the can’t do list. Stick to the can-do list only! This is your baseline! What you can do as a minimum without getting worse.

Once you have managed your two weeks of only doing ‘can do’ items and not feeling any worse than you already do (accepting that you probably feel pretty crappy already), you have then successfully “established a solid baseline”.

Crash – boom and bust

Now, the theory goes if you do too much (all the things on your can’t do list) then you will “crash“. Doing too much is a boom, and the crash is the bust. A crash is when you’ve done more than your body wants you to do, more than you can tolerate and you essentially fall in a heap on the floor. For me, this looked like vomiting, migraines, inability to stand up from sitting, inability to climb the stairs, inability to walk, inability to think straight, inability to communicate what I wanted to say, inability to follow what was happening in a TV show or read a book. The aim is to not get there. That is the ‘bust’.

Most people who suffer from chronic fatigue are in this cycle of pushing and doing too much, and then crashing … up and down on a never-ending roller coaster.

The aim is to get out of this cycle by (another new word) pacing.

Pacing

Stepping out of the cycle of pushing too hard and then crashing is very very hard.  You do this by ‘pacing’ – which is essentially doing as much as you can do, but not what you can’t do, without doing too much and crashing, and not doing too little and not improving.  (Sounds simple – right – NOT!?)

This is where my specialist physiotherapist came in with her diagrams and charts.  There was a timetable where you’d plot out what your ‘can dos’ are into a typical day and you stick to it.  Sounds easy, but if you are anything like me your day-to-day is too varied to stick a routine on it and the whole thing was just unrealistic and not feasible based on my life.  It just wasn’t working or helping.

So instead of throwing your hands in the air, falling into a pit of despair, like I did. I’ll explain how I ‘established my baseline’ and achieved pacing without timetables and graphs.

How to pace from your solid baseline consistently?

So much jargon – right? Now, if there was a simple answer to this, we’d all be cured.  So, I’m not purporting to know how to do this, or that this works, but this is what helped me!

Planning

The first thing you need to do is plan, plan, plan and plan some more.  Think about your day, think about what you do in a day and write it all down.  Once you’ve written it down, remove anything that’s on there that is on your can’t do list.  Then, according to the physiotherapist, plot everything into a time slot in the day.  Eg, 8 am wake up, 8.30 am get dressed, 9 am have breakfast, 9.30 am rest, 10 am, do some work, 11 am – rest, 11.30 am have a snack… and so on.  But, as I say, my life doesn’t look anything like that, so I have to be a lot more flexible.  I also, despite trying extremely hard, found if I did timetable my life like that I would be miserable! So, I know what I need to do in a day and I’ll plan it accordingly.  I’ll also plan my weeks.  For example, if I’m going for a drink with a friend one evening, I’ll make sure that I don’t have plans that afternoon leading up to it, and the following morning.  If I know I’m going out in the afternoon with the kids, I’ll make sure that I don’t have plans that evening, and that someone else can make the kids dinner and get them into bed.  If I know I’m meeting a friend for a coffee, I’ll make sure I have time to go home for a rest before having to pick the kids up from school etc.

Planning also involves being organised with food – online shopping is your friend, and all kinds of other life logistics.  You don’t want to be wasting precious energy on doing tedious jobs that don’t need to be done by you (even if you think they do!).  Letters that need to be dropped in a postbox I give to my son to walk down the road and post, family laundry my lovely husband does… ask for help! And then take it… (blooming difficult).

How your body feels

The second thing you need to do is to learn how your body feels. Sounds easy but if I’m honest, it’s taken me over a year to learn this, and if I’m brutally honest, I still don’t know everything. This is something that is done solely by tuning into the body (another expression I found alien). You have to ignore the brain telling you that you can keep going. Because, believe me, it’s good at that, and half the reason why you got unwell in the first place.

You need to learn and get familiar with what it feels like to have overdone things.  For me this is being so out of breath you can’t talk, feeling panicked, shaking, nausea (and if I’m not tuning in vomiting), feeling like I’m walking through sludge, headache, pains, stomach pain, brain fog, dizziness, sore throats etc etc) – this is the feeling of the ‘crash’.  However, in an ideal world, you never want to feel any of these… because pacing is allowing you to get out of the push/crash cycle... But not only do you never want to feel these things you want to have stopped and rested well before you reach these bodily feelings. Your body will have warned you before the horrible symptoms I listed above, and you’ve got to learn (through practice, and trial and error) what these signs are. For me, it’s getting slightly out of breath when I’m not actually doing very much, my heart beating faster for what seems like no apparent reason, feeling overwhelmed, feeling a bit zoned out, shaking hands, shouting at the kids for no apparent reason. These are the telltale signs from my body. When I feel any of these I immediately stop and take a couple of moments to check in and ask – what is my body trying to tell me? Now, sometimes, it’s easy – it’s telling me I’m hungry, it’s telling me my kids are annoying, or more often than not, it’s telling me I’ve done enough and to stop. Not one more job, or just one more thing, I rest. (I’ll write another blog about rest some other time… Because there’s even more to learn about resting than there is baseline!).  I will sit on a bench and breathe, I will sit in the car, and I’ve set my life up so that the people around me understand that sometimes I just stop – don’t keep going.  Sometimes it's only a few minutes that I need, sometimes it's a ‘that’s it’ for the rest of the day.  But the most important thing is to stop, listen and rest at that point.  Do not wait and do a little more, as that’ll make you crash and keep you in the boom bust cycle for longer.  Tune into your body and this will allow you to pace your day correctly.

From pacing onwards…

The theory is … from there, you can slowly increase your baseline by adding in a little bit of activity every two weeks.  I’m still mucking around with this… so if I ever master it, I’ll spill more details then! Let’s just say for now, I managed to establish my baseline, I managed to pace my days accordingly, and I’m slowly increasing my activity (I’ve got to 3,500 steps a day, from less than 1000).  It is possible… I’ve done it… feel free to reach out and ask any questions.

I’d also advise regularly checking in and rewriting your can-do and can’t do list.  As it changes … So will what you can and can’t do. I try to do this every couple of months as a regular check-in.

Side note:

Question: What if I feel awful all the time?

Answer: Do the establishing baseline again.  I did this so many times I couldn’t even try and tell you how many times. I thought I’d worked out what was on my ‘can-do’ list but it was still too much and I either crashed and felt worse or just felt all those things (because I was in a crash). When you get the two weeks of baseline right, you’ll feel fatigued still, of course, but you won’t be necessarily fending off all the other symptoms. Don’t tell yourself this isn’t for you, this doesn’t make sense, it’s impossible … Keep at it. And reach out, I’m happy to answer any questions along your way!