Tuesday, 14 May 2019

ME Symptoms and Tips: Sleep Issues - Part Three


Hello my lovely loves!

Today we'll be diving back into optimising your sleep environment. All those things you never thought you needed to know about black out blinds and tog rating system.

Black-out blinds and curtains

Having a dark room can be really important to getting a good night’s sleep. It’s a massive signal to your brain to relax and go into sleep mode, and to stay asleep when it’s still dark.

Most people struggle when the early mornings and evenings are brighter in the spring and summer, and if this tends to be something that happens to you, investing in a decent black out blinds or curtains could be useful.
Here are some options, all with different price points.

1 - Black-out linings
Many curtains come with black out linings built in, but you can also buy ones which layer underneath your current ones. Cheap, and effective, and can be used with other black-out options.

Just be aware that certain types of curtains will block more or less light depending on how they’re fixed to the curtain pole. Ones with massive eyelets look pretty, but will leave more gaps for light to break through and stab you in the eyes at 5 am.

2 - Standard Black-Out roller blinds
These are available in most homeware and DIY shops and are the most affordable blind option. While not as effective as other, more expensive blind options, they can be pretty effective, especially when paired with black out curtains or linings.
The are installed into the window frame and usually require power tools.

The downside to standard black-out roller blinds is that they have gaps at the sides and bottom where, you guessed it, light can sneak in and stab your unsuspecting eyeballs.
An upside it that you can still have your window open behind, but in high winds the blind may slam back and forth.

I used to have a standard black-out roller blind and black out linings, but it wasn’t cutting it for me, so I chose the next option. (I also kept my curtains and black-out linings.)

3 - Cassette blind
A cassette blind is similar to a roller blind, but lessens, or completely eliminates, the problems of having light peek round the bottom, top and sides of the blind when it’s closed.

The blind cassette is fitted flush to the top of the window recess and two tracks are installed either side of the blind, flush to the recessed wall. When the blind closes, the edges of the blind go in the tracks, meaning no light peeks through.
The blind has a brush-like bottom attachment, to minimise the light from that angle.

There are usually tiny gaps where the runners and cassette meet the wall: no wall is perfectly straight, so it’s difficult for there to be no gaps at all. I’m tempted to use a sealant on mine, but I’m slightly nervous I’ll end up with no air flow in my room at all.

These are really effective, but they are more expensive, and they really need to be fitted by a professional.

These blinds are excellent insulators, which is brilliant in winter, and… less so in summer.
It’s also difficult to leave a window open at night.
Because the blind is so well fitted to the space, and the blind itself is plasticised so no light can come through the fabric, the air currents can create a bit of a vacuum, and the blind can be sucked out of its side tracks. When this happens you can manually put them back in (which isn’t difficult) but until you do you can end up with massive gaps in the blind. That’s when the sneaky 5am sunrise makes itself known to you.

Mine was around £230. Obviously that’s expensive, and I needed to save up for it, but it’s made such a difference for me that I don’t regret it.

4 - Perfect fit black-out blinds
This was the other option I considered when I wanted to upgrade my black-out situation.
Unlike other blinds or curtains, perfect fit blinds don’t attach to the wall or recess, but the window frame itself. You do have to have PVC windows for these to work, however.

Each individual window has a separate blind that affixes to the frame directly, between the glass and the sealant. They’re less expensive than cassette blinds, and you can order them online and install them yourself.

If you do decide to buy these, make sure you choose black out roller blind options, as other options often have holes in the fabric for cords, like concertina blinds. The fabric of these isn’t plasticised, and the edges aren't enclosed, so they’re not as opaque as cassette blinds.

You can open a window at night with these fitted, however as soon as a window is open, that gap is no longer covered by fabric, which is why I didn’t choose to go for this in the end.

In a perfect world I might combine the two and have perfect fit blinds in addition to my cassette, for when it’s so hot in my room I don’t care about light knives to the face anymore. Although I suppose in a perfect world I wouldn’t be sick so… swings and roundabouts.

5 - The Mystical Metal Shutter Blinds of France
I don’t even know what these are called, or if they’re sold in the UK, but on my last trip out of the country about 5 years ago, we stayed in a flat in Honfleur.

This place had metal blinds that you wound down with a crank handle from the top of the recess. They had a mid setting where there was still a tiny, tiny amount of light visible (I suspect for ventilation) and then you could keep rolling for a complete and total black out. Seriously. You couldn't see a thing.

You can have a window open and it didn’t matter because these things were made of metal and no wind would shift them.

They weren’t particularly attractive, but were still reasonably unobtrusive. They could’ve been bright orange, purple and green leopard print and I wouldn’t care. I have never slept so much, so consistently, in my life. I averaged about 11 hours every night we were there. (Although that may partially have been PEM from the long, probably inadvisable trip.)

I know it doesn’t make sense to mention these as I don’t know how to get them. The closest I've seen is an exterior roller shutter, but I can't find one adapted to be used from the inside. I even asked the guy who sold me my cassette about them and he’d never heard of them. But my god, I hope one day those are available in the UK.

I’m telling you so you can keep an eye out for them, for both your sakes and mine. If you see them sold anywhere, please email me immediately.

Keeping your room dark otherwise

Other things you can do to keep your room as dark as possible include:

1 - Stick bits of black card, or duct tape over LEDs on plugs, and other appliances. They probably won’t annoy you when your curtains are rubbish, but you’ll notice them once your room is dark otherwise.

2 - Keep the doors on your sleep floor shut.
All the black-out blinds in the world won't make a difference if there's light coming in from your doorway. I keep my door shut to cut out noise from the rest of the house, but it doubles to cut out extra light.
We also shut the door to David's office (next to my room) in the spring and summer, as it's south facing, and the light is very bright in the morning. Otherwise it just wakes me up by creeping under my door.

3 - Keep the landing light off if possible.
This one is obvious, but... if you absolutely must have light in the hallway (perhaps you have kids) then try a couple of unobtrusive night lights instead of the full blown overhead light. That way there's enough to see if you need to, but not enough to disturb you when you're trying to sleep.

4 - Try a loo light.
Bear with me on this one. Yes, it's important to have your room dark to fall asleep, but if you or someone else has to wee in the night, being blinded by the bathroom light isn't going to help you drift back off after.
You can get little motion sensor lights that hook into the toilet so you have enough to get by, but not enough to wake you up. You can even choose the light colour you find least glaring.

5 - Choose a clock with no lights.
I found this amazing cube clock online that looks like a wooden cube until you click or clap, and then it lights up with the time (and date and temperature, if you so choose).

It’s silent because it’s digital, but it doesn’t have an annoying display lit-up all the time, and you can choose the wood, metal or stone finish and display colour combo.

6 - Use an eye mask.
You might not be able to afford a new blind straight away, or be able to install something larger in a rented property, but you can always get an eye mask.
Unbelievably, I use them in the spring and summer on top of my intense window covering situation. I NEED THE DARKNESS!

Pro-tip though, look for ones with no velcro, or with the hooky side facing outwards. I made the mistake of getting an adjustable one with the hooky velcro side facing inwards and it kept snagging in my hair all night.

I’d also try and get one with a decently sized nose space. Unless your nose is very flat, a straighter piece of fabric will create gaps either side of your nose.

I like the soft jersey ones the best, because they breathe, but you can also get these eye masks that are shaped pleasingly like little bras.

Have a separate alarm

I’ve mentioned that I turn my phone off at night to help prevent overstimulation and to signal to myself that it’s time to sleep. One thing that makes this possible is having a separate alarm clock.

Having an alarm is a great way to keep you sleep schedule reasonably consistent, even if you don’t HAVE to be up by a certain time.

It’s up to you which clock you choose, but try and make sure it’s one that doesn’t disturb you during the night, either without a constant light display as above, or with a silent mechanism.

I use a sunrise alarm. My mum got it for me for Christmas in 2017 and it’s been amazing. The display turns off once the alarm is set for the night, and then a light slowly comes on and reaches its full brightness at your selected time. You can choose that period to last 10, 20 or 30 minutes.

We worked out mine looks a bit like a squished 
eyeball, but despite that, it's very effective.
Good luck unseeing that resemblance though.

Some models also have to option to have various sounds at your selected time to wake you up if the light hasn’t already. This was unnecessary for me: as you may have gathered I’m sensitive to changes in ambient light.

It’s a much calmer way of waking up than most alarms. I’ve always been a light sleeper, and my hearing is very acute now, so traditional alarms make me feel really stressed and frightened on waking. Ain’t nobody got time for that.

My cube clock also has an alarm, but it’s a more traditional beep. If that doesn’t bother you then it’s much cheaper to go for this option, or something similar.


As my hearing is so amplified now, I also wear earplugs every night. It’s probably not the best thing to do for your ears, but I replace them regularly, and switch out the types every now and then to give my ears something different to react to.

I would advise that, if you can go without earplugs all night every night, you should do so. My bed is almost directly above our TV and I need them so the gripping sounds of Line of Duty and Antiques Roadshow don’t keep me awake.

Everyone’s different, so I can’t really tell you which are the best earplugs to go for.

My personal favourites are the tapered foam ones; the cylindrical foam ones are too wide and hurt my ears after a couple of uses.

Finally that Adobe Photoshop subscription 
is proving itself worth the money.

I also like the putty style silicone ones when my ear canals need a break. They create more of a seal than relying on being fully inside the ear itself.

I’d be really interested to know what kind of earplugs you like. (I’m so rock and roll.) If you use them leave a link in the comments and I’ll check them out.


An inability to regulate your temperature is a well known symptom of ME/CFS, and it’s a complete nightmare trying to keep comfortable when you’re sleeping. Here’s a list of everything I’ve found to help. Again, any added suggestions always welcomed.

1 - Duvet/blanket options
I have a summer weight and a winter weight duvet, and whichever one I’m not using is stored under my bed. I also have a single duvet downstairs to use during the day, which I use in conjunction with the others. I never used to bother before I got sick, but now I need the flexibility.

In summer I use the thin summer weight duvet (3 - 4.5 tog), but unless it's really hot I put the single one over my feet. I find the weight on my feet makes me sleepy, so if you’re struggling with sleep you might want to look into that as an option.

If it’s really, really hot, I’ll sometimes just use a sheet, but still stick my feet under the single duvet.
In the winter I switch to the winter weight (10.5 - 13.5 tog), but if it’s arse-clenchingly cold then I can add the single on top as an added layer.

I’m also going to try out a weighted blanket this summer to see if that’s a good option. I definitely find the weight of a proper duvet soporific, so hopefully that will give me the weight without the heat of a full duvet.

The one I’ve got is perhaps a little too heavy though; it’s a little difficult for me to move. If you’re looking into those I’d bear that in mind and err on the side of caution weight-wise.

If you suffer from skin sensitivities where a touch or pressure can be painful, then I’d give them a miss. Be similarly cautious if you have serious joint pain; try being piled in blankets first and see if that weight bothers you.

2 - Fans and heaters
Look into getting a fan for you room, and maybe a heater if you don’t have one.
My wall heater doesn’t really work so I have a little electric one we wheel in when it’s cold. Just be careful of fire hazards.

For a fan I saved up and got a Dyson one: I’d heard they were the quietest and most energy efficient. I got the heater and fan combined, but honestly I wouldn’t recommend shelling out for that one. The hot air is a bit unpleasant and feels vaguely like been heated by a blow-dryer.

My fan/heater is an older version of this one.

I should've just gone for this one and saved myself some cash.

The cooling side, however, is excellent, and most Dyson fans come with a remote (handy for saving energy) and/or a timer, so you can leave it on at night for a set time.

They are still reasonably noisy, but less so that a standard fan, and the air flow is much better.
If you can’t afford something like that, don’t worry. Just get something that blows air in your general direction and doesn’t sound like some kind of racing car engine.

3 - Air conditioning
If you can afford air conditioning, get it. I am telling you right now it’s worth it. I don’t have it in my room, but my stepdad decided to get it for the conservatory last year (which you may remember was an extremely hot summer).

Previously our conservatory was basically unusable except in spring and autumn because when David had it built he forgot that things like heating and lighting were a thing that needed to be considered. Oh, David.

In winter it would become a room sized freezer that you had to wear a coat to go into, and in the summer it was a room sized radiator than did an excellent job making sure the rest of the house was hotter than the first circle of hell.
He was convinced to get it after seeing how much of a difference it made to my aunt’s house. And my god. I am so grateful.

It kept the rest of the house so much cooler than before. It was still roasting upstairs last year, but there was somewhere cool to retreat if really necessary, and it definitely wasn’t as bad as it would’ve been.
Maybe one day I’ll save up enough to have it in my room too.

I have tried the cheap and cheerful units from Argos before, but to be honest they didn’t really do much. I think for a decent one you’ll be looking at £250 plus. I definitely wouldn’t have fancy wall installed air conditioning if my parents hadn’t got it of their own accord.

If you can’t afford air conditioning, and I absolutely understand that, then...

4 - Stick ice in front of your fan.
Told you that fan would come in handy. This cools the air in front of the fan and allows it to circulate the room.
Last year we froze a bottle of water each day and kept in in front of the fan at night. It doesn’t last the whole night but it does help.

If you’ve got room in your freezer for a 2 litre bottle of ice then go for it; just remember to allow space for the ice to expand when you fill it so it doesn’t split when the ice melts again. Ice packs would probably work, but it’d be more difficult to get them in front of the air flow.

This is basically what those cheap air conditioners do. You put ice in them and then blow air through it and out into the room. Except it’s cheaper just to freeze a bottle of water and put it in front of your fan.

5 - Damp flannel by the bed
Keep a dampened flannel in a dish by the bed and wipe yourself down when you feel too hot.

Focus on your pressure points like wrists and elbows, back of the neck and forehead. I’ve fallen asleep with a damp flannel on my head numerous times. It’s so nice.

Change it out every day though, because otherwise it goes all musty and gross.

6 - Cooling Gel pads and Chillows
There are a variety of these around, and they can be really, really good.
I have a Chillow, which is a pad you fill with water and allow to become cool. You can put in inside your pillowcase or on top if you need to move it around. You can even put it in the fridge if you want to.

Some are just gel, some you fill with water. They are all wonderful in hot temperatures. That sweet, sweet cool-pillow feeling.

7 - Hot water bottle
Ah, my trusty hot water bottle. How I love thee. I know it’s an obvious one but I couldn’t write about temperature control and not give it a brief mention.

You can also fill hot water bottles with ice, but I would keep a separate one for that purpose if you want to try it. If you use the same one for hot and cold then you risk splitting the rubber, and no one wants a lapful of recently boiled water if your bottle gives out.

But don’t use these in conjunction with…

8 - Electric blanket.
If you tend to have all over body pain, or get cold all over, then you might prefer an electric blanket. You can put them under your sheet and heat up your bed before you get in. Some have timers that allow you to go to sleep with them on and have them turn off during the night.

Never, ever use a hot water bottle when you have an electric blanket on your bed, and be careful about the glass of water beside you. There are horror stories about what happens when water and electric blankets mix, and they are not pretty.

Now I’ve given you that nightmare fodder, it’s time to move onto looking at anxiety and sleep anxiety!
Tune in tomorrow for our final section: dealing with sleep anxiety.




  1. Thank you for these fantastic informational posts on sleep issues and solution ideas! Looking forward to the next post.

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