Sunday, 7 May 2017

ME Symptoms & Tips: Fatigue - Part 4


Hello my lovely loves!

Welcome to the fourth and final part of my tips for dealing with fatigue! If you've made it this far, I congratulate you; it's a pretty hefty piece, so thanks for putting up with my rambling!

Today we're looking at pacing, finding your baseline, and how to make judgement calls.
Let's get this show on the road.

8. Pacing

Pacing is something that pretty much all ME/CFS sufferers know about, but it's always worth mentioning.
Try to spread out tasks and busy days so you have quieter days for more rest in between, regardless of your ability level.
Within the days themselves, break up tasks into sections if you can feel yourself straining, or accept that you're going to have to do some extra resting if you try to power through something.

The whole point of pacing is to avoid peaks and troughs in your activity and every levels, so try to aim for what you're capable of consistently, without significant energy drops, rather than focusing on what you can achieve at the time without a thought for the consequences.

I am aware that this sucks, but you and I both know, dear Spoonies, that Payback sucks way more.

9. Finding your optimum baseline

There's a lot of talk from various ME/CFS sources about finding your baseline, but it's often confusing and there's not much in the way of practical advice.

For those of you that don't know, your baseline is the level of activity you can manage without making yourself more ill.

Personally, I think what you want to look for is your Optimum Baseline, the level of activity you can manage that means you slowly improve. That's definitely a case of long term gain over short term achievement though, and I know it might not be open to everyone if they don't have the level of help they need.
Try to put your health first whenever possible though, you ARE worth it.

This is one area where the resting regime I spoke about last time really comes into its own, because, once you've upped your rest so much that your symptoms ease a bit, you can actually think enough to see patterns again!! (Gasp!)

However, until that point comes, and even after, the best thing to do is to record your daily rests and activity periods. 

Finding a baseline really means that you have to be able to see patterns; if you’ve overdone it you can trace it back to which activity, or what number of activities, your body found too much.
Over time you’re able to see from that how many activities you’re able to do in a day without becoming overstimulated and finding it difficult to sleep, why you might be suffering a crash, and then you’re able to pace yourself much more effectively.

The problem is, of course, that part of having ME/CFS is having a really crappy memory, so writing it down is really the only way to remember what you were doing two days ago.

I experimented with a few different ways of doing this, but many of the recommended options are really exhausting to fill out. You can tell when something’s been designed by someone who doesn’t actually have fatigue!

It’ll take a little experimentation to find your best method, but this is how I do it. 

I have a notebook (I prefer long, thin notebooks for this), and in it I write the date, how many hours I’ve slept, whether or not I had insomnia (written as INS), an interrupted night (INT), or had to use a sleeping pill (TAB). Whether I had a bath, or a wash, or a wash and a hair wash in the morning.
Then it’s a list of my rests in a day to keep track of my resting ratio. This helps me stay on track with it more easily.
Finally, there’s a short list of activities I’ve done that day, like working on a blog post, having a Skype medical appointment, or doing a bit of cross stitch.
I’ll also note down things like when my period starts, or if I have a crash. Even if I have a day when I have a good cry (emotional energy expenditure)!

It sounds complicated, but it’s actually pretty simple and short to do. Here are some pictures.

The "Cafe" is my Mum's studio at the end of the garden. 
We go down there to get some sun in the winter and have a hot drink.

Some people might find it helpful to rate their fatigue level out of ten for each day. I’ve never found this particularly helpful, to be honest, so I don’t bother.

From this I’ve been able to see why crashes have happened and how many small activities I can do in a day before getting overstimulated and not being able to sleep (used to be three, now it’s usually four).
I know now that having a bath or a shower has to count as an activity on that list, but that having a quick wash in the sink and a hair wash doesn’t. 

It’s helped me to know that my usual delay between activity and Payback is two days, so I know when I’m going to have to schedule a rest day, and how many days to leave empty before an important appointment that I can’t really miss.
It’s helped me pace myself so much better, and makes me feel like I’ve regained some level of control over the unpredictable nature of my illness.

Treating your illness as a science experiment you're documenting also has the added bonus of helping you gain a little distance from it when you're struggling to deal with the emotional impact.
As something that effects every aspect of your life, getting even a minute distance from your illness makes a massive difference in your mood!

The lab coat and safety googles are entirely optional, though.

10. Energy Saving mode is not laziness 

One thing that it took me a long time to come to terms with in terms of battling fatigue, is that saving energy is not being lazy.

I sit down when I brush my teeth. On good days I could probably just about stand for as long as my electric toothbrush (more energy saving) runs on it's cycle, but I'd be tired and probably quite dizzy by the end of it. So... why would I do that when I could just sit down and avoid the whole thing, AND have more energy for other things? Those are important spoons I'm saving.

It makes sense when you say it like that, but it took ages for me to stop thinking that I was being super lazy by sitting for such a simple task on days when I could probably do it standing.

But it's little tricks like that that help me to lower the frequency and intensity bad days in the first place, so I've had to learn, and keep reminding myself that I'm not being lazy, I'm conserving my energy for more important things.
I am channeling my inner energy saving lightbulb.

Energy saver mode is a legitimate tool, and you should never feel bad for using it.

11. Posture 

One thing that can make a lot of difference to your stamina energy-wise, is finding a good way to sit.
Having your feet elevated slightly, or legs on the same level as your hips if you're really struggling, helps keep your blood pressure even, and keeps your body from working too hard.

Plenty of sufferers, especially those on the more severe end of the spectrum, also have, or develop, POTS, or Postural Orthostatic Tachycardia Syndrome.
It sounds really scary but it basically means that your blood pressure and heart rate have an unusually strong reaction to changes in posture.

The worst form of POTS means people often faint on standing, but that's not actually necessary; milder forms include dizziness on standing, or even just an unusual drop in blood pressure and rise in heart rate when standing still.

It's very likely I have a milder form of POTS, for example, because I really struggle to stand upright and still for more than 30 seconds.
I find it a lot easier to function when my legs are at a level with my hips so I spend most of my time that way.

One thing I would say is while being aware of your posture is helpful, it's best not to sit with your legs up all the time if you can help it.
Over time your body can struggle more with having your legs down again. It is, of course, up to you. You know your body best, and if you think this might help, even occasionally, then I'm glad to place another tool at your disposal.

As my health improves over time, I intend to gradually spend more and more time with my legs lowered, until I'm able to stand it more easily.

12. Judgement Calls

One of the hardest things of dealing with an unpredictable illness is disappointing people. You don’t know if you’re going to be able to commit to things, and if you decide to there’s still a chance you’ll have to back out.
Although keeping a record of your activity does help, we’re still human, and we’re going to get it wrong sometimes.
When that happens it’s hard to know whether to push yourself or not, so here’s some tips about helping you make that call.

Your health comes first

Obviously, some things, like medical appointments, have priority, and while being reliable is nice, you have to put your health first.
It’s heartbreaking, but your friends, family or workplace will not want you to make yourself worse for them. 

If they do, quite frankly, they can jog on, because the problem in that situation is not you.

Tapping (EFT)

Anxiety is super common in sufferers of chronic illness, so doing something like Tapping, otherwise known as Emotional Freedom Therapy, can be a really good tool to get rid of the excess emotion so you can look at problems with a clear head.

I’ve spoken about it before, and said that it sounds like a load of cobblers (and also looks really strange when you’re doing it), but, even though I was really sceptical, it’s actually been an incredibly useful tool for me. Have a look online and give it a try.

Enjoy vs Endure
If you’re just not sure if you can do an enjoyable activity, and are worrying about it, take a look at the way you’re phrasing in your head. “What can I do to make sure I enjoy this?” is very different to “How will I endure this?”

Positive thinking is all very good, and sometimes it can be an anxiety issue rather than an energy issue that’s causing the problem, but if you’re thinking about enduring something rather than enjoying it, then it’s probably not worth it.

If you do suffer from anxiety, try doing a meditation, or Tapping (EFT), and then check in with your thought patterns again. If they’re not edging out of endure, then it’s an energy issue. Not worth it.

Be Honest
I find a lot of the time I already know whether I can manage something or not, I just don’t want to admit it.
If you don’t have enough energy for something you really want to do, and you don’t think you’re going to be able to manage the Payback, or you’ve got things you have to prioritise too soon after, then you’re going to have to be honest with yourself. 

And then scream your frustration into a pillow. But, you know, in an energy-friendly way with rests in between.

And finally...

13. Treat Yo’Self

Sometimes you have to give yourself a treat. Whether that’s having a day (one day, mind you!) of saying "Bugger it!” to your resting regime; doing something you want to and damn the consequences (and the Payback); buying yourself a nail varnish on eBay; or just eating your own weight in ice-cream after having to say no something, you need to give yourself rewards for being on it the rest of the time. 

Being chronically ill is a total bastard, and keeping sane and upbeat whilst managing it is really, really difficult. So occasionally, treat yourself. Because you put up with a lot of crap, and you most definitely deserve it.

And so, this is the end of my massive post on battling the Big Bad Tired. 

I really hope some of you find it helpful. I’ll work on specific energy saving tips, like household aids etc, another time for you.

Sending love to all my readers, and an extra squeeze to my Spoonies.




  1. These are great tips. I find that pacing is personally really important.

  2. Thanks for blogging about these topics.