Sunday, 12 May 2019

ME Symptoms and Tips: Sleep Issues - Part One


Hello my lovely loves,

I’m afraid I’ve been putting off this post for a while now, just because I knew it would be something of a monster. However, I’ve decided to finally bite the bullet and actually sit down and write it, so today we’ll be looking at ways to help you catch those z’s. This will be split over several posts.

This is something that isn’t just applicable to ME/CFS patients, or the chronically ill, so hopefully everyone can find something in here that might help them. As always, if you have anything you’ve found that really works, pop it in the comments on this post and share the love.

Please don’t feel pressured to try all of these tips at once, or at all. Definitely don’t feel pressured to spend lots of money buying or replacing items. While there are some options that can help that do cost money, finding yourself out of pocket is probably going to make it more difficult for you to sleep, not easier.
Take your time to really consider what might help, and look into options before splurging on something that turns out to be unnecessary.

To sufferers and non-sufferers alike: sleep will not cure ME/CFS. It just won’t. So if someone has told you that, then stick it in the Nope pile with kale and yoga.
Sleep problems are a symptom not a cause, but, even though improving sleep won’t take ME away, it’s important to try and get energy from as many sources as possible; your body isn’t making it as well as it should anymore.

In terms of ME, sleep problems can manifest in a variety of ways; insomnia, anxiety/sleep anxiety, or unrefreshing sleep are some of the most common.

I think the most important thing to do, regardless of your health, is to try and work out exactly what type of sleep problem you’re having. It sounds kind of obvious, but when you’re tired and frustrated you’re not likely to be analysing what it is that’s setting you off.
The main groups of sleep problems I’ve encountered are these; overstimulation (resulting in tired but wired insomnia), pain, problems with the sleep environment (which can exacerbate other sleep issues) and anxiety, especially about sleep itself.

I’m going to try and tackle these individually, but they do all intertwine, so you may need to put your experimentation hat on to find out what combination really works for you.
To that effect…

Keep a Sleep Diary

It may be helpful to keep a basic sleep diary. It doesn’t need to be anything too in depth, just a general overview of things you did that day, and if you had trouble sleeping.

You can also write down the number of hours you slept, or other issues, but if you get anxious about sleep issues, then maybe keep it more general because specifics are more liable to worry you.
I used to write down how many hours I slept a night but I found that number to be a stressor if it dipped too low for too long, which in turn made me less likely to sleep.

From here you can look for patterns in your sleep issues. Is the problem going to sleep, or staying asleep? Is there something you do on certain days that means you’re less likely to get a good night’s sleep. Are you tired but wired? Do you get anxious about sleeping? Were you in pain? Did you have another stress dream about trying to wait tables during a zombie apocalypse?
All of this information is helpful to work out what tools might help you.

Be Honest

I’ve said this is previous posts, but there’s a great temptation to try and ignore things that might be worth a shot if they’re not very palatable.
I’m definitely guilty of this too, so it’s not a criticism, but if you want to change things then you’re going to have to be honest with yourself (and others) about things that need to change.
Then you can have a moan or a stomp and get it sorted.

Dealing with Overstimulation

Being tired-but-wired is such a weird feeling. You’re so, so exhausted, but somehow still wide awake, and no amount of lying down with your eyes closed seems to make a difference.

This feeling can be linked with sleep anxiety if you’re lying there worrying, especially if you’re worrying about not sleeping, but in my experience overstimulation feels a little less fraught than sleep anxiety. It’s more that you’re exhausted but your brain has turned into an overactive toddler who wants to play now.

Judging by the comment threads on ME insomnia posts, feeling tired-but-wired is the most common reason sufferers are unable to sleep. I’m afraid the most helpful things I’ve found to deal with this aren’t going to be very popular.

Rest More

If you’ve become tired but wired, one of the best things to help prevent it in the future is to rest more throughout the day. I’ve talked about resting in a previous post if you want to know more on how to go about it.
You’ve essentially managed to reach some bizarre state of being where you’re too tired to sleep, so avoiding that involves resting more throughout the day before settling down.
It seems counter-productive to rest to be able to sleep, but it’s definitely helped me.

There’s a lot of talk about how you shouldn’t sleep during the day to keep to your natural circadian rhythms, and while I do think that is a good idea, sometimes it’s not always possible.
Try not to sleep after 4pm or more than 40 minutes during the day to avoid the worst effects napping might have on your nights sleep. It will likely happen occasionally, so don't beat yourself up if it does, but it's something to aim towards.

Limit Activities

As well as resting more you can try to limit the number or type of activities you do throughout the day, or when those activities occur.
For example, I don’t watch TV programmes or films a. in one go, b. if they’re really upsetting, stressful or scary, or c. in the evening when I won’t have time to process them before bed.
Then I'm limiting the amount of activity, the type of activity, and the time of it, and it’s much less likely to leave me overstimulated.

Can't get over stimulated if you're not stimulated.

There has to be a certain amount of flexibility with this, for both practicality and your own sanity, but it’s definitely something worth trying if you’re struggling to sleep. Once you're getting more sleep on a regular basis you can afford to occasionally relax those rules.
For more on how I enjoy media whilst having ME, head here.

Wind down

Give yourself some time during the evening where your focus and activities are more centred around relaxation. This will signal to your body and mind that it’s time to get ready for bed, and the lighter more relaxing activities will prevent your mind becoming overstimulated just before bed.
I put all the craft projects away and read on my phone, or watch ASMR videos.

If you can already feel that you've become overstimulated throughout the day, use this time to do a guided meditation to try and calm down.
I use one from the Optimum Health Clinic when I'm feeling a bit frayed around the edges that talks about a bubble of protection.
You imagine being inside a bubble, push all the worries and buzzy thoughts outside the bubble and take in calming feelings.
Although my version is from the OHC through access to their site, it's a fairly common premise, so it's possible to find similar ones elsewhere. If I find a good one, I'll link it here. If you know of one, then pop it in the comments.

I also find certain ASMR videos useful if I'm already feeling overstimulated.
ASMR stands for Autonomous Sensory Meridian Response, and is a phenomenon where some people find certain sounds or visuals as "triggers" for a tingly or relaxing feeling in the body and mind.
ASMR videos usually involve people doing certain actions - talking softly or whispering, brushing hair, even pretending to do your makeup - to trigger that response in viewers and help them relax. There's a theory that it's a similar feeling to babies being cared for by their parents when they're very young.
I stumbled into ASMR one day when I was looking for a makeup tutorial on how to mimic Phryne Fisher from Miss Fisher's Murder Mysteries for a costume I was working on. The best one I found just happened to be a whispered ASMR one, with occasional finger tapping on the various products. Afterwards, I felt really, really calm.

The costume turned out pretty well too!

I'll admit, some ASMR videos can be a bit creepy, but if you find a good ASMRtist then it's great, and anything to do with having my hair brushed or cut is bound to make me limper than a wet noodle.
Yesterday, I watched one involving having my virtual beard groomed which was surprisingly effective.

Be aware of blue light

Chances are, everyone reading this has already been told to avoid screens for an hour before bedtime. For some people that works, and that’s fine. It’s definitely worth a try.

However, for me it has made no difference. I was told I should read a physical book before bed, not on a screen, but that actually makes it harder for me to sleep. I find physical books harder to put down, and reading one is more tiring for me than reading on my phone.

I have altered my phone so it lowers the amount of blue light it emits after 8pm; there’s a setting called Night Shift on iPhones and iOS devices that allow you to do this.

One greater concession I have made is turning my phone off at night. I have a separate alarm to keep my awake hours stable, so I don’t need it for that. I’d be completely useless in an emergency, and we have a landline anyway.
If it’s on at night the only thing it will do is use power and tempt me to look at it instead of sleeping.

Turning your phone off at night is something I’d really recommend; it’s a brilliant signal to your mind that it’s time to go to sleep.

Keep area calm

My final piece of advice is to try and keep your sleeping environment visually calm. This doesn’t bother everybody, but I find it harder to relax when things are messy or there are lots of things in my eyeline.
It seems to be a mix of overstimulation from the visual stimuli and anxiety from knowing things are messy or cluttered.

Most sufferers agree supermarkets are really difficult to cope with because they’re noisy, brightly lit, and there’s so much stuff for you to try and take in. What you’re basically trying to do is create the opposite of that: quiet, gently lit, and have everything as calm to the eye as possible.

Having posters and knickknacks in a limited amount can cheer you up and make you feel happy, but too many mixed with daily detritus like cables and used cups can leave your brain scrambling to process.

It can also help to move things out of the room that are heavily associated with waking activities (if you can). I moved my old computer screen to my stepdad’s office, because I associated it with working and being busy; it just didn’t give off the vibe I wanted my bedroom to have. It’s a lot easier to relax in my room now.

I realise that the amount you can do this will depend on your living circumstances and your energy levels, but even the smallest changes can make a big different. If all else fails, put messy things in piles, and cover them with a cloth to keep it visually calmer.


That's all for today; tomorrow we'll look at dealing with pain and the start of getting a great sleeping environment.




  1. Excellent tips! These are tips that do really help!

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