I am a member of several ME support groups on Facebook and it has shocked me on several occasions to see people ask “My doctor/ME clinic have told me not to nap, but I can’t get through the day with out it. How do you cope?”. Now this is small part of a piece of advice I was given that has proven very helpful, but this part on its own, I feel, is dangerous to patients.
Please note: in this post I am just relaying advice I have been given and works for me. We are all different and different things work better for different people but hopefully some of you who are new to pacing and managing your ME might find some useful tips to take away. And FYI, I am a moderate ME sufferer.
Many of us have discovered that “pushing through”, which is what happens if you are told to just stop napping, can cause a major deterioration in our health. Many seem to be asking for stimulants to help them get through the day, because without a nap, this is the only option. Unfortunately, this usually just masks how exhausted you are in the moment, it doesn’t mean you will feel any better the next day, in fact you’re likely to feel worse because masking your exhaustion means you’ll probably push yourself harder.
Now my ME clinic also told me not to nap but, and this is key, they told me to rest frequently throughout the day, before that true exhaustion kicks in. When you’re told not to nap, what you should be being told is not to keep going until you can’t function and then sleep for several hours. Instead, you should be being told to take 20-30 minute rests BEFORE your battery is empty regularly throughout the day.
And, it seems counter intuitive, but, for me, resting regularly allows me to do more with the limited energy I have because I function better inbetween rests.
This will take some practice, you are probably used to pushing through even to get to that point where you crash out in the afternoon and you need to learn to read your symptoms and figure out what the warning signs are that its time to rest. For me, if its mainly mental exhaustion my brain will very obviously stop thinking as clearly. The speed at which this kicks in if I’m doing a mental task is scary, and over time I’ve learnt how long I can, for example, write this blog and stop just before the fog sets in. (FYI, it’s for 20 minutes with a 10 minute rest in the middle!)
Now, you need to figure out what works best for your body and your life (I don’t have kids for a start). But here’s my basic set up:
What is rest?
For me, rest is laying down in a dark (or with the light shielded out) and quiet room for 20 minutes. No reading, no music, no audiobooks.
What if I fall asleep?
I’ll be truthful with you here. I can’t always stop myself falling asleep. My ME clinic said if you’re falling asleep, you’re resting too late but the truth of it is, you will sometimes fall asleep and you won’t be able to help it. Set an alarm. And if you do fall asleep you will most likely feel groggy, so try to sit up straight away so you don’t just fall back asleep but let yourself come round a bit before actually doing anything or getting up. On a bad day, I fall asleep in most of my naps regardless of how well I’ve been pacing and resting.
How often do you rest?
I rest approximately every hour and a half. If I’ve done something more exhausting I have a rest after less time. First thing in the morning I feel super groggy and if I went by symptoms alone I would rest straight away and fall asleep and never get up, so I wait approximately an hour and a half for my first rest.
In the evening I tend to feel a bit better, but have been advised its still a good idea to have a rest in the evening as, if you are feeling more awake because your circadian rhythm is out of whack, being more active can encourage your body to produce more “awake” hormones and having a rest can discourage it from doing this, meaning insomnia is less likely to be on the cards.
But the length of time you can generally keep going before needing a rest is highly individual. Experiment a bit with it and find what works for you.
What if I’m out and can’t rest?
You won’t always be able to put this system into play. Sometimes life gets in the way. That’s okay, and yes I do have an actual nap if I’ve had to, say, go to a hospital appointment for a few hours and have been in a bright stressful environment and have had no chance to rest. It’s ok to break the rules sometimes, you’d probably go mad if you didn’t.
And if you regularly are in situations where you can’t do this, I haven’t had the direct advice to relay to you, but I believe the advice is to try and work some sort of breaks into your day, where after exerting yourself physically, mentally or emotionally or just by being awake and functioning, take five or ten minutes (or whatever you can fit in) to sit down somewhere quiet and do nothing at regular intervals throughout the day.
I hope this is helpful to some people. If anyone else has any tips about resting vs napping please do comment.