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.
Laura’s Pen
X
With myasthenia gravis I also have to rest frequently. It really does help me not crash, and I can be more productive.
Glad to hear a similar approach is useful in other illnesses too.
I definitely get a lot more out of my life since implementing it as I can do short bursts of things that give me a sense of achievement or make me happy, then rest and still function (although I still have to vastly limit how much of those things I do.)
This is all so very true and scheduled rest (plus working to a baseline) has been far more helpful to me than simply thinking about pacing.
I remember when I first saw my physio. He said I needed to be out of bed all day. I told him that wasn’t possible and he explained he didn’t mean it was something I could do immediately but something to work towards. It’s months later now but I’m thankful to say– so long as I stay within my limitations– I am out of bed all day. Such a difference to spending most of my day in it! That said, I still rest a lot. Now it’s on the sofa though 🙂
DEar Laura and other ME sufferers, don’t feel you’re the only ones doing this. I have damaged arm and leg from an accident, now 15 years ago, I use this pacing, periods of rest, with an alarm through the day, its amazing how much of a difference it makes to stamina, ability to do what I want to do (sometimes in short spurts I admit) instead of the exhaustion and pain which comes from pushing through when the energy simply isnt there to do that. Keep up the good work.
A little 10min meditation works wonders as a quick way of fuelling up. But Donna mentioned the Baseline. I agree, this is very important. If new to pacing it can seem impossible to even work out what your baseline is but you get there in the end. Mine is to lie flat on the bed – anything other than that means I’m using spoons. But that iniself is no good because who wants to spend thier life doing that so It’s just a baseline, not a reality. But it’s good to know as I can work out from there where I should best use my energy. And it’s not cleaning 🙂
This is the best advice to cfs suffers. I was first ill in 2006 . The advice i was given from the rehabilation team at Derby Royal Hosp. Was find your baseline which will be way less than you think!! Intially i rested every 30 mins for 30 mins lying on my bed doing nothing no technology radio tv any thing. Then do something read, easy watch tv no gripping dramas as even they tire you out. I would get up have a shower then have to rest for 30 mins . I was off work for a year then eventually went back working 3 hrs every other day but having 2 x 5-10 minute break by this time i could rest sitting on a supportive chair rather than lying down. I did eventually get released from that job as i was on a phased return for 6 months. Did manage to work 35 hrs at term time job still having a 20 minute rest before i left for work . Always taking a lunchbreak 30 min on my own so i would switch off. Then i would rest for 30 minutes on my return home before cooking tea. It does work . Also try to go to bed and get up at the same time each day to train your body to have more refreshing sleep.
It really does work not easy to do but now i do a more phyiscal job with no stress which is much better but i now work 40 hrs a week . I hardly feel that i still have cfs but it is still there and i do rest every day . X
Hi Laura
I have CFS & Fibro
I usually have a lie down in my reclining armchair each afternoon, sometimes I fall asleep but not always. I decided to research whether this is recommended & found your blog.
I wanted to thank you for your great advice which I’m going to try out. Many thanks.
Kind regards
Judy
Hope it helps Judy, good luck x