It’s similar in a lot of ways to my post on the “You Don’t Look Sick-ers” and my guide on “What not to say to Sick People", but it’s been a little while since then and I just wanted to update my thoughts on it, because there was one thing that cropped up that I don’t think I mentioned in those posts.
"I don’t see you as ‘disabled'.”
This is a fairly common thing to hear, and it’s pretty clear that those saying it think they’re paying you a compliment.
I’m going to give you a hint here - it’s not.
“Don’t worry, I don’t see you as…” never ends with a positive statement.
The most common way of ending that sentence is with something negative. Lazy, stupid, bossy, weak, whatever it is.
When someone says this then it’s to reassure someone that they’re not something bad. It’s a statement of commiseration.
And even if the person saying it loves the disabled person, they’re still saying that they think negatively of the disabled community at large.
The disabled person doesn’t stop being disabled because you said that. They know they are. They now also know that you think being disabled is inherently negative.
You’re also signalling that you’re less likely to help them with things on the basis that you don’t think they’re disabled enough to require it.
Not being considered disabled, or disabled enough, is a legitimate health risk for a lot of us. It means we’re less likely to be given access to support (monetary and otherwise) and things we need to live a healthy life. This is especially true of those with invisible illnesses.
If someone said “I don’t see you as ‘having a severe peanut allergy’” to someone with a severe peanut allergy, it would a. be ridiculous because they do, and b. make them extremely wary about eating anything the person got them.
I don’t like being disabled by my chronic illness, but... my chronic illness happens to be very disabling. Some people’s might be less so, we are not one homogeneous entity. Some may have had their illness or disability their whole life. They likely see it as an integral part of their personalities, just like being left-handed, or gay, or particularly keen on avocados.
Those differences don’t make a disabled person lacking.
Whether we like it or not, those illnesses or disabilities are a part of us.
It is not for you to presume that someone dislikes a part of themselves.
If you came up to someone, particularly a stranger, and said, “don’t worry, I don’t see you as ‘ugly’”, that would not be a compliment.
And if you replaced “disabled” with any other minority group? Still looking like a compliment? No. You would sound racist/sexist/homophobic/transphobic/etc. Because that’s what you'd be.
You do not get to decide what someone is or isn’t, and you do not get to decide whether the thing they are (or aren’t) is acceptable.
This issue relates very closely to the “don’t let your disability be your identity” trope. Disability or chronic illness is seen as something so negative, that the concept of being proud of it or including it in our outward persona is completely incomprehensible.
It’s often framed as a tool to try and motivate the disabled people into more fulfilling lives, but the key here is that people think that “fulfilling” means “as an abled person lives”.
This concept is so ingrained that it’s usually impossible to comprehend someone living a fulfilling life AND being disabled. People assume the two are mutually exclusive.
And therefore that anyone who isn’t pursuing an abled concept of living a fulfilled life is giving up on being fulfilled in life (or life itself) altogether.
It’s often those who struggle the most to seem “normal” and don’t talk about their conditions that are the most rewarded by society, even if doing so is injuring them or exacerbating their problems.
When people accept their conditions and take steps to make their lives easier, especially if that makes them appear more visibly disabled, is when they’re considered to have given up.
“Giving up on life” is bandied about A LOT. But giving up on an abled life is not giving up on life. It’s knowing your limitations, accepting them, and living the most fulfilling life you can.
And EVERYONE, disabled or not, has limitations.
I’d argue that most abled people are not able to live the most fulfilling life they want to either, because very few people have the access to the funds, or support necessary to do so. Perhaps they suffer from another kind of discrimination that prohibits them from doing things they’d otherwise enjoy.
Very, very few people achieve all their dreams in life.
There are things in this life that I know I may not get to do because of my condition, and that is heartbreaking. But, there is absolutely no guarantee I’d be given the opportunity to do them if I wasn’t sick. None. That is life.
Some people do achieve things, amazing things, with disabilities. And I’ve spoken about this in a previous post on inspiration porn, which is where Disabled People Achieving Things is held up to society in general as proof that humans can do anything IF THEY JUST PUT THEIR MIND TO IT (and looks down on those who don’t excel or achieve these things).
Disabled and chronically ill people are treated both as less than human and more-than-human. Often at the same time.
After a while, all of that starts to make you think of it with less equanimity. Even the most earnest “inspirational” video can come across as, “well if a DISABLED PERSON can do it, just think what THE REST OF US could do!”
When society continually puts people like you forward as inspiration fodder, but looks down on those of your group that don’t excel, it can make you feel jaded. It can make you feel ashamed of who you are, because we are no less immune to these assumptions than anyone else.
But it can also make you double down, and feel all the more determined to be proud of who you are.
I don’t pretend to know everything about this subject: our issues are complex and I can’t speak for such a massive, diverse group, but I know this.
We’re not performing monkeys.
We aren’t here to make people feel good about themselves, or to push them to try and make something of themselves, or teach some grand, important lesson in life. If someone learns something, fine, but we’re not background characters in an abled person’s life, we’re the stars of our very own technicolour stories.
Yes, we have issues. We have to do things differently, or not at all. But, you know what? So do lots of people. I can’t go run a marathon. A lot of abled people can, but... they don’t.
I can draw, pretty bloody well, actually. A lot of abled people can’t.
We’re not more or less than human. If anything we are a concentrated version of humanity. Its ingenuity, its flexibility and ability to cope with change, its perseverance, and yes, its pain, its struggles and its lowest moments, where sometimes there is no recovery.
We are the most diverse minority, with people from every race, religion, age, gender and sexuality. We are a microcosm of all the ups and downs in life, and all the ways people can respond to them, is displayed in each of us.
When you look at us we’re not subhuman, or superhuman, we’re arguably the most human humans.
And one way or another, by accident or age, you’re probably going to be one of us. And that’s ok. You should be bloody proud of it.
Before we go any further, I’m afraid I’m not better. I’m still sick, and, although I have seen some (very small) improvements, I imagine that will be true for a while.
But today I wanted to talk about what sometimes happens when people do get better.
There seems to be trend I’ve noticed over the years where if a sufferer improves, either marginally or completely, they are often told they didn’t have M.E. in the first place.
In some cases I can understand it, either because they didn’t show classic ME symptoms or because they’re now trying to sell you something.
Even with others I’ve caught myself wondering. But I’m trying to train myself out of that because speculation like that isn’t helpful.
There is currently no diagnostic test for M.E. so we will NEVER know for certain. Speculation will never lead us anywhere concrete, so it’s an impulse that can only do yourself and others harm.
We’ve all had our run-ins with people who don’t think we’re disabled or sick enough, and it’s always hurtful. But it’s doubly as hurtful when it comes from another disabled or chronically ill person, someone who’s meant to understand what that feels like.
It’s ok to be sad about not being better. It’s ok to be angry about it.
But you can feel sad and angry for yourself and still be happy for others.
It may take time to be able to do that.
The Optimum Health Clinic has a whole host of Recovery Story videos on YouTube and for a long time I just couldn’t bring myself to watch them. It hurt too much, so I decided to wait until I felt ready.
Sometimes I would mute people online or unfollow if I couldn’t manage. I still do if it’s wall-to-wall new baby photos because that makes me sad, even when I’m happy for my friends who have become parents.
But there’s a fine line.
It’s ok to need a break, and to distance yourself if you need to for your own sanity, but it’s not ok to put that burden on the person who is better, and it’s certainly not ok to berate them for their joy, or to call into question their illness or their suffering.
They may have been misdiagnosed, they may not. But if you woke up tomorrow and were better, whether by miracle or new treatment or new diagnosis, would that change the suffering you’ve already been through?
Would the time you’d spent alone and in pain suddenly not have happened?
Of course not.
And how awful would it be to finally, FINALLY get better, only for everyone who you thought was on your side to berate you for it? To be angry at you for being happy you weren’t sick, or weren’t as bad? For even maybe having something extra or different to what you’d originally thought?
And who’s to say that your recovery wouldn’t give clues about where M.E. researchers might look further? It could be the beginning of a whole new breakthrough!
If you get better from ANY illness you do not owe anyone your silence or to only post sadness. By all means try to be sensitive - I think most people who have lived with this hell are all too aware of how difficult it can be and try to be sensitive to those still suffering - but you are allowed to be joyful.
I would be heartbroken if I finally got what I’ve spent years longing for only to discover that EVERYTHING I’ve done trying to help fellow sufferers and their allies on this blog, for example, was now deemed hollow and untrustworthy. Because even if I ended up having something else (which I’m pretty sure I don’t, even though most if not all sufferers have wished for it at some point) everything I’ve already done has been done under the impression I have M.E. In. Good. Faith.
If you need to mute that person on social media, fine. If you’re not able to deal with their joy, that’s ok. But please don’t make them feel guilty for having what we all crave so much. They probably already do anyway because of the messed-up way society treats the sick and disabled, particularly those with invisible illnesses.
The point is, they are not sending these things to you to hurt you, they’re shouting them to the world because they’ve felt silenced for so long.
We’ve already lost enough friends because we got sick. We shouldn’t have to lose more if we get better.
And in the end there’s one less person suffering in the world. Even if it’s only a marginal improvement. Does it really matter how or why? Surely it can only be a good thing.
Welcome to the final section of this extremely long discussion on sleep health. If you've made it this far, congratulations, you are a trooper.
Our fourth and final section is looking at anxiety and how that relates to sleep.
Dealing with Anxiety/Sleep Anxiety My experience of sleep issues was difficult. It took me a while to get a decent sleep environment, a routine that worked for me and find the level of activity that stopped overstimulation. But by far my most difficult issue was sleep anxiety, which I still struggle with on occasion.
Anxiety is a problem for me, more generally, and can be for insomniacs as well. Stress and anxiety are fairly common causes of sleep issues, but for me it ended up morphing into anxieties specifically about sleeping.
It’s hardly surprising that having an energy condition can make you very nervous about not getting enough sleep, but for a long time I didn’t actually realise that it was anxiety, not insomnia itself, that was causing me problems.
I never knew when it would happen, but sometimes I would have what I called at the time “insomnia attacks”. My temperature would skyrocket and I’d be dripping with sweat, my heart would beat incredibly fast, I’d feel dizzy and faint, would shake constantly, and would often end up throwing up. I had to wake up my mum to come and lie down with me just to get my heart to stop racing and to calm down enough to even think of going to sleep. Mum, saint that she is, would usually stay with me until I had gone to sleep to make sure I was alright. This happened at least twice a month to begin with and would take me days, or weeks to get over.I can recognise now, of course, that these were actually full blown panic attacks.
It’s taken a very long time to find something that works to deal with this, and, as I’ve said, it still happens now and again, although thankfully not to the degree it did before.
I tried a variety of different coping mechanisms for dealing with it, and then slowly took away the less effective, or those that gradually became unnecessary, until I was left with a core toolset.
These steps can also be helpful for dealing with stress and anxiety at night.
Routine Establishing a routine is something most people tell you is useful to getting a good night’s rest, and can therefore be frustrating to hear, but it is actually a useful tool if you think about it in the right way. A lot of people find routines a bit stifling, but what you’re actually trying to do is either find or create triggers to let your body know it’s time to go to sleep. That’s it.
There maybe be things you already find do this (like closing the curtains, or brushing your teeth), but routine is useful because it trains your body and mind to see certain tasks and behaviours as signals to relax and sleep.
You’re essentially trying to train yourself like Pavlov’s dog. But with hopefully less drooling.
For some people this will be simple, but given the fact you’re reading this, chances are that you need something a bit more comprehensive. Sorry, dude.
For my routine I’ve mentioned I have a wind down time. I have that and a light’s off time, rather than a single set bed time. My wind down time starts from when I go upstairs to my room (if I’m not there already). I also don’t keep those times rigidly structured, but give myself a window. If you have a specific time to do things it can add pressure and make you more anxious, so leaving a certain amount of flexibility should help keep that at bay.
Most professionals say you should try and keep your bed for sleeping, and try to go to sleep as soon as you’re in it, but that’s frankly not very practical, especially if you’re chronically ill.
By giving myself a wind down period, I take that pressure off, and limit my activities to ones I find help me relax, not wind me up. I never read from a physical book in bed for example, because I find that harder to put down than reading on my phone.It’s that halfway house that tells my body and mind that it’s getting to the end of the day, so soon it’ll be time to sleep.
I can’t tell you exactly what your routine should be, because everyone is different, but I think the most important things to remember when building one is that a. you’re doing it for a good reason, and b. it can change over time.
Sometimes when realising we need to establish certain rules, it can feel like a punishment, but it’s actually not. It’s the familiar concept of short term pain for long term gain. Doing so will likely mean you have more energy and stabilise or improve your condition in order to have more options over time.
I’m not saying you can’t get upset or angry about it (I have definitely had a little cry on a summer’s evening when I’m in bed and I can hear the neighbour’s children still playing outside), but try to remember your goal. And that, secondly, it’s not forever.
When I first started my routine I really struggled with the concept because it felt like a life sentence. That I’d be going to bed at 5pm forever, and have lights out at 8pm, and have all these specific, set-in-stone things to do. But that’s not what happened. Routines change over time, and that’s normal.
I still go upstairs between 5 and 6pm, but it’s more some peaceful time I give myself rather than have taken away from me. The act of going upstairs is the trigger, so I don’t need to be strict with the timings, or what my wind-down activities are.
I don’t settle down to sleep now until 9 or half past, because I’ve managed to find what works for me, and I don’t need to spend the extra time using sleep-inducing tools to get me to sleep.It’s still early, but it works for me and I ultimately feel better for it.
The following sections are everything I’ve done during my routine, after lights out, to help me sleep. They’re arranged in the order I would follow. Some I still use, some I really don’t need anymore and only break out occasionally. I’ll let you know which is which as we go.
Tapping/EFT It’s the point in every tips post where I explain EFT/Tapping is a weird psychological tool that looks and sounds ridiculous but I’ve actually found really helpful. One of these days I’ll actually get round to doing a post on it exclusively so I can stop talking about it separately each time.
If you aren’t aware already, EFT (Emotional Freedom Therapy), or Tapping, is a way of working through your worries and emotions about issues in a more manageable way. Using it for sleep has been the most effective tool against my Sleep Anxiety because I’m able to get everything that’s worrying me off my chest before I settle down, and I do it every single night.
As I tap I talk through all the possible things that could go wrong; not being able to relax, not being able to drop off, having nightmares, waking up and not being able to get back to sleep again. The words I use have shortened over time, but I’ve said them so often now that I start to yawn constantly whilst doing it.It’s worked out as an extremely effective trigger for my brain to switch off.
Meditation If you don’t want to do tapping you can always try meditating. There are loads of different guided ones available online to download. Try a few samples and pick someone who sounds relaxing to you. I like Andrew Johnson the best.Many end with suggesting that you sleep, which I’ll get into a bit more later.
Focus on comfort
This may be part of the meditation you do, but instead of getting caught in your head, try to focus on all the nice things about your environment. This can take practise, as it's very hard to snap out of your head once you're there, but focusing on the nice soft sheets you've debobbled, your comfy mattress topper and your squishy pillow helps you to stop going in circles. If you can stop a spiral it makes relaxation a lot easier.
Stops Sometimes, even with Tapping, my brain still likes to provide me with all sorts of information and worries that keep me awake. In those circumstances, I use the Stop method laid out for me by the Optimum Health Clinic. I’m not sure how much detail I can go into, because it’s not technically my method, but I’ve altered it a little in that whatever’s bothering me I mentally load into a giant catapult and punt into the distance. Whilst telling them to do one. It’s very effective.
(Seriously though, the actual method they use involves categorising your thought patterns so you can separate yourself from it and is very useful too, so if you’re able to do their course I would recommend it for that, and the other psychological tools they give you. It is rather expensive though.)
Notepad by the Bed An oldie but a goodie. Keep a notepad by the bed to write down things your brain just won’t let go of. This will usually be tasks you need to complete. Or in my case, things to mention in my next blog post. Let the notepad take the strain.
Visualisation Visualisations are a bit like self-guided daydreams. They’re designed to help you see how you want things to go in your mind. You can also use them like personalised meditations to signal to your brain it’s time to sleep.
I’m a very visual person, and sometimes meditations can be a bit boring. A beach. A forest. A lake. These are fine, but I like to add details to make them feel really real. And sometimes add a bit of whimsy.
Two visualisations I’ve used regularly involve “taking off the day”. In the first I walk around my dream house, locking the doors, saying good night to all the rooms, washing, and even clocking out on an old machine that goes from “awake” to “asleep”.
The second is even more elaborate and involves deciding on a beautiful dress that I think sums up that day. I’m talking full fairy princess. After all, it’s in my head and I can wear whatever I want, so I might as well make it fun.
I’m slowly helped to change out of my fabulous gown into comfy nightwear, so I’m literally removing the weight of the days worries and stresses. I have imaginary helpers so I can give that weight to someone else. Sometimes particularly difficult things will be represented by very heavy jewellery, so you can imagine yourself feeling lighter as it comes off for the day.
I don’t use this one so often anymore, simply because I don’t need it, but it’s a nice one, and really great at putting your mind into a better state.
Sleep Tracks If the visualisation didn’t work then I would break out a sleep track. These I do still use occasionally, even though a lot of the interim steps have become largely obsolete.Mine is from the Optimum Health Clinic, but there are a lot of these available online.
I would recommend having them on something different than your phone, because hopefully by this point your phone is off and not tempting you with social media and cat videos.
I use an iPod shuffle for my sleep and meditation tracks, but any simple MP3 player would do. It’s entirely possible you have one lying in a drawer somewhere.I like the shuffle because it doesn’t have a screen, so there’s no display to accidentally wake me up when I’m starting to get sleepy.
I’d also recommend making sure you have something on after your favourite sleeping tracks that is a soft sound. You don’t want to have finally started to drift and then get blasted by death metal.
To begin with I would use sleeping tracks every night and still be awake at the end of a track. Then I would find myself missing parts and waking up enough during the next track (rain sounds) to turn it off and put it away. Eventually I fell asleep enough during the track that it became unnecessary.
Relaxation Before I started to fall asleep during the sleep tracks I would do a relaxation meditation afterwards. Rather than a guided mediation, at this stage I preferred a self guided one, as there’s nothing to turn off afterwards.I would start at my left toes, and go through each section of each limb, imagining them relaxing. I would often use the phrasing my various meditations tracks had used as a guide.
Sleeping tablets If I've gone through all these various stages and it’s still not happening, I use sleeping tablets.They’re not something I like to rely on all the time, but having them available to me has made an INCREDIBLE amount of difference.
As I’ve said before, you might find it a little difficult to get prescribed straight-up sedatives. Some GPs are unwilling to give them to use all the time, as they can be addictive.If you have other issues, like pain, then your GP will probably explore other avenues before breaking out the big guns.
By the time I actually got round to asking for them, my main problem was the sleep anxiety. Most other avenues have other options, but it’s a little more difficult to control anxiety issues. I explained to the doctor what was happening, and our discussion wound down to this; if you know you can sleep, you worry less that you can’t.
Having access to sleeping tablets has made me need them less, because I know that if things get really bad I can take a tablet. I have a safety net, and that has calmed me down massively. I only take half at a time and that’s usually enough to help me drift off.
For a time I felt guilty and nervous about using sleeping tablets, but I average out at around one box of Zopiclone (28 tablets) a year. Some people have to use them every night (and that’s ok too).
For daily peace of mind it’s 100% worth it. Over time I hope to slowly need them less and less until I ended up with a box that has gone out of date and I don’t feel the need to replace it anymore.
I do occasionally worry that my GP will take my single yearly box as a sign that I don’t actually need sleeping tablets (especially as I’ve recently moved GPs), but I’m pretty confident in my argument to keep them, and I have various other healthcare professionals who’ll back me up.
If you think this is something that could really help you, then it’s worth talking to your GP about.
One warning though: if you do take them, put water in your mouth first, chuck it to the back of you mouth and swallow as quickly as possible. Then drink more water. Potentially have a biscuit.They taste VILE. I got one caught in my throat once and I nearly vommed - it’s that bad.I’m reasonably sure they’re deliberately manufactured to be as disgusting as possible to prevent you from using them too often.
Other options that might be suggested are Melatonin, Promethazine, and of course Amytriptaline. You can also try lavender teas and extracts, but make sure your doctor knows you're taking them if you're discussing medication options.
Have everything on hand It’ll help you keep calm if you have everything you might need close at hand before you settle down for the night. By my bed I keep:WaterOat Biscuits (slow burn off)PainkillersA hot water bottleA sleeping tablet (I have a small pill box with a pre cut tablet so I don’t accidentally take too much, or drop them when I’m struggling. The rest are elsewhere.) Earplugs - two different typesEye masks - two different typesiPod with sleep tracksFan/heater remoteClock(A damp flannel in the summer)
Knowing every eventuality is covered allows you to relax and switch off much more easily.And finally…
A universal truth I want you to remember something: sleep fluctuates.It doesn’t matter if you’re healthy or not, sleep cycles fluctuate and you will naturally have good days and bad days. Or nights, as the case may be.
Don’t panic when this happens, because there are so many things you can try, and there’s always another night to try again.
I believe in you. You can do the thing.
May your sleep be as deep and soft as this cat’s leg floof.
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.
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.
Earplugs 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.
Temperature 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..
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.
Let's jump right in with and look at the next steps of getting better sleep. Today we'll be looking at dealing with pain, and the first steps of setting up a good sleep environment.
Dealing with Pain I have created a whole post on dealing with pain, so you may wish to go look at that in more detail if pain is a common insomnia trigger for you. There are a few that are more sleep specific, however, so I’ll discuss them here as well.
To see the separate post for dealing with pain, head here.
Keep warm (or Cold) By far the most useful thing I’ve found to deal with pain at night is heat. My pain is usually centred in my hips, and sometimes my legs and back, so I basically cover myself in hot water bottles in those areas.
Obviously this becomes difficult to manage in summer, but I do tend to have less pain in summer anyway, presumably due to the warmer temperatures. Similarly, I try to keep my hips covered and warm throughout the day to prevent the aches setting in before I go to bed.
Hot water bottles, heat packs, and warm clothes are your best friends. If cold works better for you then consider ice packs. Watch for environmental changes See if you also get more pain at certain times of the year. If, like me, you get more pain in winter or when the temperature abruptly drops (ta, Britain), then it’ll mean you’ve got more options for preventing extra pain by doubling up your clothes in your problem areas. I wear two pairs of leggings pretty much from autumn to spring.
Medications There are many options when it comes to pain medication, and these can sometimes be combined with sleep aids. The best thing is to have a chat with your doctor and work out what the best option is for you. You doctor will likely ask you how often you suffer from pain, and insomnia. If both are frequent, and likely linked, they may suggest Amytripaline, which is used to help long term arthritic pain, as well as being used for sleep issues. Other options include Diazepam.
For me, my insomnia and pain is less frequent, so mine gives me Zopiclone (a straight-up sedative), which I use now and then for insomnia, and then I use paracetamol for the pain. You may have a little bit more difficulty getting sedatives, as these are potentially addictive. However, if you really need them, stand your ground.
Find the best environment for you Getting a comfortable environment to sleep in is imperative if you suffer from chronic pain, especially joint pain. It’s important for sufferers in general, so I’ve given it it’s own section, but definitely read it, because you’ll likely find it useful.
Dealing with Environmental Issues This particular section is about getting rid of all those little niggling issues that make it harder for you to get comfortable. If you’re not comfortable it’s harder to sleep, and that’s why this is linked so closely to pain issues.
What follows is going to seem like an extremely unnecessary level of detail, but when you’re struggling with sleep, every little helps.
Optimising your sleep environment can often be a little expensive, but I’ll do my best to give as many options as possible in the hope that you can find the cheapest things that will actually work for you, and to prevent you shelling out for something that’s ultimately useless. Getting a good sleep environment has been one of the most expensive parts of being ill, but given the improvement I’ve seen since I’ve actually been able to sleep, I’d say it’s been a good investment for me.
As I said before, don’t feel pressured to try all these things at once. Take the the time to really think about what bothers you when you’re trying to sleep and judge accordingly.
A good bed If you’re going to invest in one thing for your sleep environment, choose a good mattress. Nothing will make more of a difference to your comfort, and it can really make a difference with pain.
And the most important thing to remember when buying a mattress? Orthopaedic does not necessarily mean good for pain; it just means firm. And firm does not mean better for you. It depends on your weight, build/gender, what kind of pain you experience, and what position you usually sleep in.
When my mother went shopping for a new mattress for me, that was the first thing the salesman said to her. I can’t tell you how glad I was to hear about this. My parents had been gunning for me to have an orthopaedic mattress for a while, but I KNEW that solid surfaces just made my pain worse. I wanted something as soft as I could get away with.
I know there are studies into orthopaedic mattresses, but frankly, I’m unsure if those studies took different body shapes, or even different genders, into account.
Look at this way. I am 5’8”, and I have wide shoulders and hips, and a relatively small waist in comparison. I’ll use this basic shape to show my torso.
That weird red line is my spine in this scenario.
I usually sleep on my side. When I lie on a firm surface, even if I sink into it a little bit, my waist goes down, and my hips and shoulders are forced upwards.
This puts a lot of pressure on my hips and shoulders and twists my upper back. I end up with pain in NEW areas, as well as pain so intense in my hips that I can’t sleep.
This was the problem I had with the N:Rem mattress topper, during the product review I took part in. It uses foam that is fairly solid alongside softer pieces that you arrange according to the area you have pain in. The hip pain arrangement had the softer pieces at the hip, and more solid pieces at the top, but because of my wider hips it forced my shoulders into the solid foam and made them hurt. My shoulders having nowhere to go in turn pushed my hips into the mattress and made those hurt too.
On a softer mattress my wider points (which are also the heaviest points) sink into the mattress. My waist is a little more supported. I’m not twisted into a weird shape. My pain lessens.
I can’t tell you exactly what mattress you should be getting, but I can tell you the three general rules the wonderful salesman told us.
1 - Your weight/height Generally speaking, the heavier you are, the more firm a mattress you’ll need. Men typically have firmer mattresses for this reason - they naturally sink into them more. I would say, however, I have a soft mattress, and I’m probably around 10.5 stone. (I think... I don’t really weigh myself to be honest.)
Taller people will tend to have their weight more evenly distributed across the mattress (unless you sleep curled in a foetal position) and so will probably be able to get away with a softer mattress than they might otherwise do.
2 - Your build/gender Another reason why men are traditionally more comfortable with firmer mattresses is that they don’t tend to have bodies that are as curvy. This obviously is a sweeping generalisation, and I suspect is not very helpful. Instead, look at these shapes.
Actually look at your body. Are your hips wider than you shoulders, the same, or smaller. Is your waist significantly smaller than your hips/shoulders.
Pick the shape that most resembles your body, and imagine it on its side. You can even make your own shape if you want. Where are the pressure points? Do those match up with where your pain is? If they do then maybe you need to rethink your mattress.
If you sleep on your back or front it still makes sense. Women with larger chests who sleep on their fronts will need a softer mattress, because a firm one will provide no give in the bust area and force their backs to arch, putting more pressure on those muscles and joints.
On your back, if your spine is very arched then a firm mattress will potentially leave it unsupported and leave those muscles in your back tense. (My mum has this issue.) You may want to add support with a small pillow.
3 - Number of occupants If there’s more than one person using the mattress this will effect the weight on the mattress, and usually mean that a mattress has to be a little firmer to accommodate for it.
It means there’s also some compromise needed on what each user finds most comfortable. I’ve got to say, us singles actually have an advantage when it comes to picking a sleep environment, because it doesn’t have to suit more than one person.
If a firmer mattress is needed for weight reasons, then you can soften it by using one or more mattress toppers. You may end up with a princess and the pea situation, but it’s worth it if you’re comfortable.
Finding a fitted sheet may pose a problem...
I would argue that the person with the worse pain should probably have the last say, however. People who aren’t in pain or chronically ill can adapt much more easily to a different sleeping situation than those that are. This is one area where something like the N:Rem sleep system would have the advantage, because different sides of the bed can be set up with different levels of firmness, so both occupants are comfortable.
You’ll also need to think about whether to go for a sprung mattress, a foam mattress or a mix. Mine is a Highgrove Beds Vicuña natural pocket spring mattress. I always get the impression from people with foam mattresses that it’s not particularly easy to move around on them, so for a jifflebum like me, a sprung mattress is better.
I don’t really know enough about mattresses to break down the pros and cons of these options, but a decent sales assistant at a show room should be able to help, even if you ask over the phone or via email.
It can be difficult to get to a show room to test mattresses, but a trusted friend or family member can always go for you as long as you’re clear with what you want. My mum chose my mattress and it’s great. The very, very nice salesman also allowed us to have it delivered and let me lie on it before the plastic was taken off, on the basis we could still return it if it wasn’t suitable. I suspect this is unusual, but if you’re housebound like me, maybe it’s worth discussing options with your local showroom.
Some mattresses and toppers also offer trial periods and money-back guarantees, so it’s worth keeping an eye out for those if you’re not able to go try things yourself.
Even though financing options are often available for larger purchases, it may not be possible for you to buy a new mattress. If you need a softer surface, but can’t afford a new mattress you can always look into mattress toppers. These make a surprising amount of difference, and can even be layered to create even more softness. They usually come in foam, synthetic padding and feather options and come in various thicknesses, and a variety of prices to match.
I have one on my soft mattress; partially because I had it left over from my old mattress and we didn’t want to waste it, and partially because the softer my bed is the happier I am. I essentially want to sleep in a giant cloud-nest.
Any quip I could write could never beat the text of the Image source
Pillows Pillows are also an important factor in both comfort and pain management. It took me a long time to find something that didn’t give me neck ache, but now I use a sculpted memory foam pillow, that supports my neck. You can find it online, here.
My step-dad, David, is actually the person who got me on to this. He got one a while back and swore it was brilliant. I was reluctant as it was described as firm (as I’ve mentioned, I like soft things) but he lent his to me for a couple of nights because my super squishy ones were giving me neck ache. After using his I immediately bought one for myself.
It’s very difficult to tell you what’s going to work for you, but it’s a little easier to experiment with pillows than mattress, given that they’re generally much cheaper.
I tend to prefer synthetic fibre and foam pillows to feather because, unless you get a very high quality pillow, the feathers can poke through the fabric and you get jabbed by the pointy feather quills when you least expect it.
It’s the ultimate betrayal. There you are, minding your own business and expecting squishy goodness, and then tiny duck needles stab you in the face and neck when your guard is down. No, ta. (Feathers can also be an allergen or asthma issue, and make my acne worse. Yaaaaay.)
In addition to my foam head pillows, I also have synthetic fibre pillows for between my knees and to hug. I wasn’t joking about cloud-nest.
Putting a pillow between your knees can help take further pressure off your hips and prevent your knees rubbing together. I don’t know if I just have extra bony knees, but it tends to hurt if I don’t use a pillow. I keep my ankles apart, or cushioned by a duvet for the same reason.
Hugging a pillow does the same thing for your shoulders, and tends to open up your chest a bit more. Sometimes my ME makes me short of breath, and being of the busty persuasion can mean the added weight exacerbates this issue. When my upper arm is supported by a pillow I find it much easier to take deeper, slower breaths, and it stops my shoulders and back muscles being pulled around.
My knee pillows are square and from a brand called Rectella. (That’s quite the name.) I got them cheap on eBay and they are AMAZING. My arm ones are just normal synthetic rectangle pillows.
There’s also a pillow under the foot of my mattress to bump this up ever so slightly. I didn’t know it was there for ages, Mum snuck it there, but she swears blind I’ve slept better since it was there, so… worth a try?
Make sure you have non-scratchy sheets, if you can avoid it. ME can make your skin more sensitive, and it's going to be difficult to relax if you're laying on the equivalent of a bed of straw. Nice quality cotton sheets are fairly easy to come by, and have become more affordable in recent years, but if that's still too scratchy try jersey. For the winter you can even get brushed cotton, which is a bit like falling asleep wrapped in giant fuzzy pyjamas.
If you can't afford new sheets, then there are unscented, natural fabric softeners available from places like Big Green Smile or Ethical Superstore. The eco-friendly options usually cater well to people with skin and scent sensitivities.
You can also get a debobbler or pilling remover, that will take any uncomfortable pilling from your sheets and make them softer again. You can get manual combs, but for ease of use and saving your energy I'd recommend an electric one.
I'm beavering away on the next post, which should hopefully be done in time for next month. It's the one on sleep health, so it's going to be rather hefty. In the mean time, please enjoy these photos of Tiny Hannah's latest adventure to London. She went London in March with my parents, to see Betrayal at the Harold Pinter Theatre, and have a quick shufty at the Anti-Brexit March and lend support.
Mum and David said the play was excellent. I'm still disappointed TH didn't actually get to march in the protest. I could've made her a tiny sign.
You tell 'em!
Outside the theatre.
A very understanding attendant has a photo with TH.
This month I've delved back into the slightly intimidating world of YouTube and created a video as a response to the many articles (and, latterly, radio segments) accusing ME patients of forcing researchers out of the field by being in some way dangerous, or unintelligent, or anti-science.
We all know, of course, that this is complete bollocks, and the only science we dislike is poorly done, unethical science. That does no one any good.
I wanted to create something as a direct counter to these pernicious articles, so people who have only heard about ME and the PACE trial from it's authors and supporters might gain a little more understanding as to why we're so against it. And show myself as a normal ol' sickie, not a "militant activist".
So for your delight and delectation, here is 15 minutes of my face at a truly atrocious angle trying to explain to people why we're not dangerous, or stupid, or anti-science.
Please excuse the choppiness of the edit, but I spaced out too often or repeated myself (yay brain fog!) that I would've gone far beyond the 15 minute content limit for unverified youtube accounts. I may create an outtakes video of me getting confused - I think that could be quite funny.
My response to the "ME Trolls" Headlines - YouTube
Links listed in the video description are as follows.
Just squeaked in before the end of the month to let you know that Tiny Hannah is back! And today she went for afternoon tea with my Mum, Aunt, Cousin-in-law and my Aunt-in-law. (Relation-titles are confusing and difficult.) It's Mum's birthday tomorrow so they went to Congham Hall for a natter and to stuff themselves with cake - as is right and customary.
In any case, I haven't been up to much writing-wise, so I'm hoping I'll ave something a little more substantial for you next month. In the mean time, enjoy!
Today I wanted to talk to you about events and the negative side of excitement. I’m pretty sure all Spoonies will already know what I’m talking about, but for most people, it’s rare that excitement is seen as a negative.
I remember seeing a video where someone was talking about how to use excitement to potentially stop a panic attack. The idea was that the adrenaline released during fear and excitement isn’t any different, so by telling yourself you’re excited, not anxious or frightened, you can redirect that feeling into something more positive.
Long time readers will already have noticed a problem here… for an ME sufferer or anyone with an energy condition, adrenaline, no matter why it’s produced, is a one way ticket to Payback Town. Too much excitement can steam roller you just as effectively as anxiety, and, in my experience, it’s a lot harder to control.
That knowledge can set off it’s own anxiety, fully aware that you’re wearing yourself down but clueless how to stop it. It can quite easily spiral from there.
The problem is that there are plenty of tools set out to deal with fear and anxiety, precisely because they’re viewed as negative, but bugger all for dealing with overexcitement.
I spent most of my post on How to Enjoy Media as a Sufferer talking about ways to lessen the impact of adrenaline to make it easier to to deal with film and TV. I’m going to attempt to do the same thing here, but with a rather large caveat... I’m still learning myself. This is one of the hardest things I find to do.
I’m naturally very excitable and enthusiastic, and I always enjoyed being so. I used to physically shake every Christmas morning because I got so excited.
I hate that I have to reign in such a large part of myself, but it’s only through years of letting it run wild and then being unable to move for weeks or months I’ve accepted it’s best to try and… tone it down a bit. That way I can actually still enjoy some things, instead of being so overcome I just end up in bed before I get to do anything.
I know it might seem a bit odd writing this after Christmas when it would’ve been more useful before, but a lot of stuff I hadn’t had a chance to try out before. Every year I sit down and think about what might help next time, so a lot of this is fresh off the press!
So here are some things I’ve found useful to deal with events and the excitement that comes with them. Some are specific to Christmas and the festive season, but others could be used more generally.
Warm Glows, not Fireworks
To start this list I thought it might be best to talk about what to aim for. I don’t want you (or myself) to not enjoy things anymore, that’s not the point of this, but I do want to try and enjoy them more gently.
The way I try to think of that is that I’m trying to enjoy the warm glow of a banked fire, rather than the explosion (and immediate fizzle) of a firework.
No offence to Katy Perry, but being a firework is not useful.
In this (rather laboured) metaphor everyone else is some kind of magical firework that either just keeps on trucking, or continually turns itself on again like one of those joke birthday candles.
Spoonies are regular fireworks and will just lie of the ground until a disgruntled and slightly hungover person comes along and sweeps us up with an old broom. Nobody wants that.
Try to aim for that warm, snuggly glow you get when you’ve got a hot drink and a comfy seat in front of a fire on a bright, lazy Sunday. It’s a much more sustainable type of enjoyment.
It’s okay if the thought of having to do things more slowly makes you angry or sad. Nobody wants to limit themselves or the way they enjoy things, and it’s not fair that we have to.
Have a cry, have a rant, shake your fists at the sky, whatever you need to do. This illness takes a lot, and every time it has I’ve had to have a small meltdown before I pick myself up and find a way to make things work. Occasionally those feelings come back even if I’ve found workable solution. That’s normal, so give yourself that time.
I've spoken before about how the worst thing you can do is compare what you can do now with what you could do before you were sick. It’s also the most difficult thing not to do, especially with lots of friends around telling you all the things they can still do that you now can’t.
It's doubly difficult around milestones like birthdays and Christmases, and even other people's events like weddings.
Since it’s virtually impossible to stop comparisons completely, try to limit your comparisons to the worst periods of your illness, or when you knew less about managing it. Yes, you could do more before your illness, but last year you could only listen to one christmas song, and this year it was three.
Last year you tried to go to the door every time there were trick-or-treaters and this year you have learned something from that and let someone else feed ridiculous amounts of sugar to children in face paint.
A period not a day
One of the things I’ve noticed helps me most is trying to think of Christmases or birthdays, or even Halloween, as a period of celebration rather than a day.
Focusing on a single day tends to compress all that energy for me much more, a bit like focusing light through a magnifying glass. As we’ve discussed, it’s better when things don’t burst into flames, so thinking of “the Christmas period” or “my birthday week” takes the pressure off significantly, so I don’t wear myself to a frazzle waiting for a specific time to have fun.
Last year this meant I kept my advent calendar downstairs instead of in my room to get used to this idea, but this year I managed to keep it in my room without it making me focus on a day so much. Instead I tried to enjoy each day as part of the Christmas period which just happened to include having a small amount of chocolate every day before breakfast. Oh no. What a shame.
Spread things out
You have the perfect excuse to make your fun times last longer, so take it. Spread out activities over the week, or month, instead of trying to shove them all into a day or two.
Decorate for events early so you have time to a, recover from decorating, b, enjoy the decorations longer, and c, allow your brain and emotions to become more used them so you don’t get overwhelmed or too excited when lots of other things are already happening.
See friends and family before and after an event so you’re not too overwhelmed on the day itself.
Even consider spread out present opening over a longer period of time so you’re not too tired. (Although if you’re the kind of person who’s excited over presents builds with suspense this one probably isn’t a good idea.)
If there’s anything extra that needs to be done, like presents for Christmas, then take spreading things out to a ridiculous degree, if necessary.
I like to make Christmas presents for people, but after years of getting stressed about not being able to do it easily, I’ve started making them a year in advance. That way I get to enjoy making things for people, and doing it during the Christmas period without feeling stressed. It’s something that really helps me cultivate that warm glow we’re going for, without any ensuing anxiety.
I do the same for any Christmas cards I design.
You will inevitably want to do all the things. You also are extremely unlikely to be able to do all the things, at least without seriously damaging yourself.
Prioritise what’s actually important to you and have two lists, what you want and feel capableof doing, and what you’d like to do if you have the energy.
Focus on the first, and if there’s any spare energy for the second, brilliant. If not, then you still did things you really wanted to do.
It’s better to plan small and then surprise yourself with something extra you weren’t sure you could do, than to plan too much and stress yourself out too much. It’ll also help prevent that unpleasant, roiling mix of excitement and anxiety.
This leads us to...
Be honest with yourself
When prioritising be honest with yourself about whether you actually want to do something, or if you feel you should. Those are not the same things, and you should not put pressure on your health to do things you don’t want to (or have energy for) because of other people.
I know that’s easier said than done, and there’s a lot of pressure from friends and family, especially at Christmas, but you’re sick, and your health comes first. You’re the one who will have to deal with the fall out, not them, so you’re the one who gets to decide how that energy is used. It is not your fault you can’t do certain things.
Similarly, actually try to be honest with yourself about what you can sensibly manage. This isn’t a particularly fun exercise, but it’s one of those occasions where you need to think in terms of long-term rather than short-term. You’ve got to get through this event, or season, or whatever, so you need to be honest about what you can conceivably manage.
Being a bit more honest should help keep the excitement more manageable too. Be your own mum, even if you need to huff about it like a teenage stereotype.
Be honest with other people
Once you’ve worked out what you can manage, you need to tell other people.
I’ve had a number of Spoonie friends be bullied into doing more than they can manage for events because they weren’t open with how their condition effects them, or their friends didn’t understand. They were often left bed-bound for a long time afterwards.
Please allow me to express myself fully using this helpful GIF.
These people are your friends and family. They care for you. If it’s your birthday then they’re literally celebrating you. You are entitled to ask for their understanding and help in celebrating in a way that if manageable for you.
If the event is for a friend, especially an able-bodied friend, then you are still allowed to ask for either a way to make it manageable. If there isn’t one, it’s okay to ask for an alternative date where you can celebrate in a way you are capable of without ill effects.
Self-preservation is not selfishness. It is not your fault you are sick. If people kick up a fuss then they need to be informed in no uncertain terms that you’re the one who will dealing with the aftermath, which is often lengthy and painful.
You would never ask someone you care for to suffer pain or severe impairment just because you wanted to do something in a certain way, and real friends or family members should never ask the same of you.
They have flexibility where you don’t, so allow them to use it and offer them the chance to be a good friend.
It’s also worth reminding people that you need to know in advance about events and visits, and that surprises are only good if they don’t use energy.
If they’re still hesitant then refer them to a blog like this one, suggest they ask questions of the ME/CFS community and their carers and friends online, or any of the ME charities who offer advice.
Even just reminding them that there are thousands of people who have the same problem should help, let alone hearing those people back you up.
And we will back you up. Seriously. Send them our way, and we’ll tell them.
When making plans for events always have a plan for what to do if you need to stop and rest, change things to help, or go home. Have several.
It’s not being pessimistic, it’s being sensible, because if you suddenly start dropping you’re much less likely to be able to make new plans or decisions.
Before I understood this, Mum and I once split up to go into two different shops. (This was before I was housebound.) We agreed to meet outside Superdrug and then walk to the car. I started to drop and had to abandon my shopping, but Mum wasn’t done with hers, and so wasn't at the meeting point. I didn't have my phone.
Instead of either going to the bench several shops down (which admittedly was quite far away), or into the cafe opposite where I could watch the street, I wandered back and forth between the car park and the meeting place, steadily using up what little energy I had.
It wasn’t deliberate, it was because we hadn’t discussed what to do outside of the one option of meeting and my brain fog was so severe that I literally couldn’t think of any other options. I had used all my energy and there was none left for coming up with another plan.
I knew we’d discussed “outside Superdrug", and “the car”. So I just wandered aimlessly between the two until Mum finally found me about ready to pass out.
The other options hadn’t occurred to me until Mum asked me why I hadn’t done them.
It was not a pleasant round of Payback.
Have back up plans. Then back up those back up plans.
Know your triggers
This may seem obvious, but bear your triggers in mind when deciding what events to attend, and forming your back up plans.
Knowing that your light sensitivity gives you really bad brain fog is important when you’re planning on going to a place that may involve flashing lights, for example. *coughcoughChristmas*
Knowing your triggers means you can plan around things that don’t work for you, and come up with back up plans for if they can’t be avoided. Like having sunglasses with you to deal with the lights, or earplugs to cut out background noise or loud music.
Leave space in your calendar
Again, this seems like an obvious one, especially given what I’ve written so far, but give yourself plenty of days off around all your events.
For one thing, you need time to recover from your events, especially if you’re spending extended periods in a state of excitement.
For another, certain times of year mean that no matter often you tell people not to, someone is going to “just drop by”.
Extra days off give you a fighting chance to deal with uncertainty.
Go with the flow
With any event there can be a strong pressure for things to be “perfect”. I’m not sure that feeling has ever done anyone any good.
Your birthday does not have to be perfect. Christmas does not have to be perfect. Not even a wedding has to be perfect.
Putting so much pressure on yourself is only ever going to make people anxious and stressed, and mixed with excitement it’s a dangerous cocktail for an ME sufferer.
This year we found our turkey was off on Christmas morning. In years gone past I might have got upset about that, but, in the grand scheme of things, what does an off turkey matter? We didn’t eat it and get sick. We had lots of other lovely food to eat. We were warm. We had a beautiful tree and thoughtful presents. We had each other.
Yes, it was annoying, but pressure for things to be perfect just means that if something does go wrong you’re less prepared to deal with it. If you’re not careful it can cast a pall over the whole day, and what’s the point of that?
Learning to go with the flow, and laugh about these situations is so much more relaxing. Besides, Mum and David managed to barter their money back, a free bottle of bubbly and £50 for the ME Association, so it all worked out pretty well in the end!
Try to relax about things and enjoy them for what they are, not some mystical gold standard which is impossibly to reach for a healthy person, let alone a Spoonie that already has a lot to deal with.
If you have to do things a day, or even a week, late, so what?! You’re still doing them, and that’s the important thing.
Make sure you have your favourite relaxation tracks ready to go. My favourite apps are Relax +, and Mindfulness by Digipill.
I also listen to tracks made specifically for me around remaining calm at Christmas by my Hypnotherapist, Juliet Emerson. If you have a hypnotherapist then perhaps they could create something similar for you. (If not, and you'd like one, Juliet is lovely.)
I mentioned last year that I was working on trying to get more resources made for dealing with overexcitement. I’m still working on getting Juliet to put her stuff online - she’s brilliant but a bit shy, but she recognises there’s a massive gap in the resources for this, so I’m pretty hopeful there. Once I’ve managed to convince her I’ll link the tracks here.
She’s much more likely to be able to do one for overexcitement in general as well, rather than just something geared towards Christmas.
I also spoke to Andrew Johnson last year, and he said he’d consider put something in his upcoming app, Holistrio. I checked this year, and it’s there!
If you download the app (which is free), there are two tracks in the “relaxation” section. They’re both called “Relaxing Holidays” and one ends with a sleep finish, and the other with a waking up finish.
They’re not specifically about overexcitement, but they are about getting through the festive season calmly, and enjoying it without getting overstressed whilst trying to get chores done. They’re definitely worth a listen, especially as they’re free!
Tapping and EFT
Tapping or EFT can also be a good way to work through emotions like excitement. You can look up tutorials on this online, especially on You Tube, although I’ve yet to find someone to explain as well as my no-nonsense Scottish psychologist.
Sleeping when dealing with excitement or anxiety can be really difficult, so just try to do your best and be healthy with it.
Go to bed at a regular time where possible, make sure you’re comfortable, have sleep meditations at the ready, and don’t be afraid to ask for sleeping tablets if you need them.
Despite doing much better with my excitement this Christmas, I still put aside a sleeping tablet to take on Christmas Eve. I know myself well enough to realise that, no matter how calm I’ve been, that’s always going to be a difficult night to get to sleep on.
I’ll be doing a full post on sleep health soon, so keep an eye out for further tips.
After the event and its payback has passed, sit down and think about what worked and what didn’t, both in terms of..