Friday, 1 November 2019

Halloween 2019

Hello my lovely loves,

Two posts in one week - will wonders never cease! To be honest I felt I should, because after I told everyone about my Christmas cards they sold out so quickly that I feel a bit guilty leaving that post up when people won't be able to buy them!
Thank you so much to everyone who bought them. It was so wonderful knowing that they've all been sold and that people liked them so much.

So I thought it was an excellent time to show everyone my Halloween costume from this year.

I knew I wanted to be either Morticia or Gomez, but I couldn't decide which, so I decided to be both!

I've seen half and half costumes done before, but I've always felt like two characters from the same thing (or perhaps two characters that are played by the same person) have an edge over man/woman costumes - they just just make more sense to me.

Tiny Hannah accompanied my costume with her own Tiny Wednesday outfit, complete with axe, and Mum and David were Grandmama and Fester.

Poor David. He's never even seen the Addams Family (somehow??) and had to look up what the character was like to know what to do. As you'll see from the photos, he tackled this issue by picking one facial expression from google images and sticking with it religiously in every photo.

I also created two YouTube videos showing how I made the costume, the props and the extras, like the Thing I made from a hand shaped candle.


Part one is costume construction.


Part two is extras and props.


And without further ado, here is our Addams Family. Happy Halloween, guys!

H









"Don't laugh. I know he's still making 
The Face, but don't laugh."





Monday, 28 October 2019

Christmas cards :)

Hello my lovely loves!

It's been a little while while I've been preparing for Halloween and Christmas fun, but finally it's all come together. My cards are now on general sale!

These have really been intense to create. It's basically taken me all year because there is so much work in them. But on the other hand, that means I'm particularly proud of them.

I decided to create a card/craft kit hybrid. I always struggle if either I want to give a gift but can't afford it, if someone is in that grey area between card or gift recipient, or if they live abroad and sending a full gift is hella expensive.
So... craft kit cards!






Cards are available on my Etsy shop here, and you can check out the video tutorials here (gingerbread house) and here (carousel).

As ever, 10% of the profits of the cards will be going to Crisis at Christmas, to give much needed support to the homeless.

I hope you like them as much as I do!

H

Monday, 2 September 2019

Standby Hedgehog: The Prequel

Hello my lovely loves,

Just a quick one today to ask you to bear with me. I hate to break my once a month streak, but summer has proved rather busy and exhausting so I'm afraid it will take a little time before I come back with another in-depth post.

There will most likely be some crafty bits coming up soon, however, as I am stuck into Halloween and Christmas organisation now. It takes so long to do everything now that I plan things at least a year in advance; I already know what next year's Halloween costume will be, and I have an idea for the one after that as well.

In the mean time, here is Standby Hedgehog living his best damn life.



H


Tuesday, 16 July 2019

Disabled Pride and "I don't see you as Disabled"

Hello my lovely loves,

Today I wanted to talk to you about something I’ve seen online, particularly as the summer includes a lot of Disability Pride events.

Recently a hashtag spread around twitter - #disabledcompliments - and I want to address it a bit. 

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. 
Because we are.


H

Sunday, 9 June 2019

On Getting Better

Hello my lovely loves,

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.
Who knows? Next time it might be you.

H

Wednesday, 15 May 2019

ME Symptoms and Tips: Sleep Issues - Part Four

PART ONE ~ PART TWO ~ PART THREE ~ PART FOUR

Hello my lovely loves!

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.



If it helps, think of yourself in this fabulous animal trainer’s outfit.


Clearly letting your chest hair be free is very important to animal training.
(Wild animal circuses are not a good idea btw. Be aware.)

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.


This is my jam.

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.


Lol to this gif.

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:

Water
Oat Biscuits (slow burn off)
Painkillers
A hot water bottle
A 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 types
Eye masks - two different types
iPod with sleep tracks
Fan/heater remote
Clock
(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.

No source I'm afraid. 
I just have this on my phone for when I feel sad.


H




PART ONE ~ PART TWO ~ PART THREE ~ PART FOUR

Tuesday, 14 May 2019

ME Symptoms and Tips: Sleep Issues - Part Three

PART ONE ~ PART TWO ~ PART THREE ~ PART FOUR


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.


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 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.

H


PART ONE ~ PART TWO ~ PART THREE ~ PART FOUR