PART ONE - PART TWO - PART THREE - PART FOUR
Hello my lovely loves!
Okay, yesterday we did the tricky bit and talked about how fatigue feels, so it's time to get onto a slightly more upbeat topic and talk about some coping mechanisms.
It’s going to be pretty tricky to list every single thing I do to save or build energy in one post, considering that’s what I spend 90% of my time doing, so I’m going to focus on a more general overview this time, and then I’ll do posts on more specific items and behaviours another time.
If you have a preference of how those are presented (by room, or in the order I use them for example), then let me know .
I made so many mistakes in the first few years of this illness, so please don’t beat yourself up if these are things you haven't tried, or taken seriously, in the past. That's most definitely not my intention, and I've probably struggled to change just as much as you, if not more.
For a long time I didn't really understand, or want to understand, how serious my situation was (and is), and it took a severe downward spiral in my health to make me realise that I had to alter the way I was approaching my illness.
If I can write anything that might save anyone the pain of downward spiral, and help them reach those realisations without one, then I will.
1. The different types of tiredness
There are several different types of tiredness, even though it's difficult to tell when they all feel so awful!
Obviously, there's physical tiredness, but you know that feeling after a good cry? Emotional tiredness.
There is mental tiredness, that comes after using your brain for a period of time. (Obviously when you have ME/CFS that period is a lot shorter!)
There's even environmental tiredness; where you become fatigued by your own surroundings. It's that natural feeling that you need a break to stretch your legs after being in one place for a long time.
Changing your surroundings, or your position in a room, means sufferers can get some relief from this. If you are bedbound, even turning your head to the side can give you a new, slightly different view.
I also consider social tiredness a separate type, although technically I suppose it's a mix of mental, emotional and physical. But I find this one wipes me out the most, and sometimes I can still read a little or do another small activity even if I'm out of social energy, so I consider it different.
It's important to take these different types of tiredness into account when resting, because the best way to build energy, and get relief from the constant fatigue, is to address ALL these types of tiredness.
Resting to an ME sufferer has to mean a complete physical and mental rest. And emotional if you can manage it. Mental tasks, and emotions are just as tiring as physical ones, so it’s really important to get good quality rest that reflects that.
If you're lying down but using mental and emotional energy to worry about things, as I often did, then that's not going to help, so there are different things you can do to make sure your whole self is relaxed as possible.This leads us nicely into our next point.
2. Relearning Rest
By far, the most important thing you will ever to do to fight this illness is to relearn how to rest properly.
Most healthy people think of resting and think of putting their feet up and watching some crap telly, but when you have ME/CFS that just isn't going to cut the mustard. (Which sucks, because who doesn't love Homes under the Hammer?)
Our bodies simply do not have the capacity they once did, and anything that isn't relaxing your body and mind completely isn't really resting. And yes, that means TV. Le sigh.
My immediate reaction when someone first told me this was to get really defensive and angry at the thought of having to miss out on another thing that no one else was, but I'm so, so glad I did it. There were tears and strops and angst, but it was most definitely worth it.
Lying down, shutting your eyes and relaxing your body and mind as much as possible is really the only way to build the energy we're using back up. (At least until the scientists come up with a magic pill!)
It's harder than it sounds, but over time I've found a few ways that help me completely relax my body, mind and emotions.
It might sound like a bit of a faff, but it's completely worth the effort. Resting properly has been the single thing that's most helped me to improve.
Channel your inner Jess
It's not easy to change your habits after years of doing things a certain way, but I think after a time having a chronic illness like ME/CFS, you come to a realisation: pretending things are the same doesn't work. If you want things to be different, you have to be willing to change.
3. Tips for resting
A. Focus on your breathing
Try to breath into lower abdomen, because this mimics how we breathe when we're asleep, so it automatically calms the body.
Listen to the sound of your breaths and focus on the sensations of breathing. Your breath feels slightly cooler on the way in than it does on the way out, so notice all those little details.
If it helps you can imagine a calming, repetitive image to breath to, like waves on a beach.
B. Use your imagination
There's a meditation technique called visualisation that can be really helpful if you're struggling to focus.
The mind naturally wants to think, so you can use that and think of something that helps you; a really relaxing place, for example.
Lots of people like beaches, but I'm more of a forest fan, so I try to imagine myself in a forest and try to get as many of the details as clear in my mind as possible; the light, the smell, the sound, what I'm standing/sitting/lying on, how the bark would feel. Everything.
It's great if you don't get to go out much too, because as you get better at it it's almost like you're actually there.
You can also visualise your body and try to "heal" it. There's all sorts of studies and statistics into helping the body through visualisation, and, while I don't think I can think myself out of having ME/CFS, it can be relaxing and weirdly fun to imagine tiny workers fixing things around my body.
It's frustrating not having any medications to fight ME so it feels like you're doing something positive, and even if you don't want to try imagining healing things, you can imagine soothing and relaxing muscles, and that's pretty helpful.
C. Do not beat yourself up
Resting like this is hard, especially if you’re doing it for long periods, multiple times a day. There will be days when you struggle and get annoyed and frustrated, so when that happens, as it will, don’t beat yourself up about it.
Even when resting is going well it’s still boring and you’re going to get distracted so just do your best, and try not to worry past that.
It’s perfectly natural, so be kind to yourself.
If you struggle, then think, "what would I say to my friend if they were in this situation."
D. Meditation tracks
By far the most useful tool I’ve found for resting, and it’s especially useful if you’re struggling to relax and switch off.
I use meditation apps on my phone, and I also have a separate iPod Shuffle that I use to keep meditation tracks on.
(I like to have a no-screen option available to me, because sometimes I’m liable to get distracted if my phone is on, and also because I have tracks on there to help me sleep if my insomnia is flaring up, and I turn my phone off at night to help me relax and signal to myself that it’s the end of the day. If I need to use my sleeping track, I don't want the bright light of the phone screen making me more awake.)
THE LIGHT! IT BURNS!
The main thing to remember about both apps and relaxation tracks is to find a speaker that you enjoy listening to. If you find them or their accent annoying then you’re not going to relax.
There’s a man who does relaxation tracks (who I can never remember the name of) who has a really strong London accent. Loads of people find him really helpful, he’s actually pretty famous in the meditation business, but to me it just reminds me of living in East London and being really stressed, so I don’t use his tracks.
There are loads of options to choose from, and a quick search online will give you loads of possible choices, but here are some apps and tracks I’d really recommend:
Digipill - App on iTunes and Google Play.
This is a free app that comes with one relaxation track, and then you make in-app purchases to download any further tracks you might want. The speaker is called Brian Colbert, and he has a very soothing Irish accent.
Andrew Johnson - Andrew Johnson has several apps on iTunes, Google Play and Amazon Android and Kindle store.
He also has a website where you can purchase mp3s onto your computer (and therefore any mp3 players you might have).
My favourite of his apps is Relax +, because it allows to you tailor your track to exactly what you want. You can control the background music, the length of the track, whether to finish the track as if you’re waking up or going to sleep, everything.
Again, there are some things included in the free app, but you then download any extra tracks that you might want.
His voice is a calming Scottish accent.
Mindfulness - App on iTunes.
This app is made by Yuza, the same people who released the Digipill app, but features Professor Ursula James (RP English accent) who guides you through a set mindfulness meditation. You can choose whether or not to have birdsong playing in the background.
It’s a great first look into mindfulness, and is £1.99.
I actually prefer this to the Digipill app because the background noise/music is more balanced with
Relax (Muji to Relax) - App on iTunes.
If you just want to listen to nature sounds, Muji has released a great little app that includes ocean sounds, birdsong, a crackling fire, a river, a waterfall and forest sounds. All of this and it’s free.
Meditation tracks provided with ‘Mindfulness: A practical guide to finding peace in a frantic world’, by Mark Williams and Danny Penman.
This book is absolutely fantastic, and guides you through a really great introduction to mindfulness, but my favourite part is the CD of meditation tracks that come with it.
The male voice (I’m not sure whether it’s Williams or Penman) is RP English and just really, really soothing.
What I like most about the mindfulness practise is that it constantly reiterates that it is normal for minds to wander, and that you don’t have to feel bad if that happens. This was actually my first foray into meditation and I’m really glad I started here.
Penman also has a book written with Vidyamala Birch, specifically aimed towards sufferers of illness, called Mindfulness for Health. Although it's specifically aimed towards sufferers of chronic pain, there are some interesting concepts around primary and secondary pain which some may find useful. (Basically when all the "oh god, not again" feelings make you tense up and get into a bit of an emotional spiral.)
They do, however, specifically say that a. that does not mean your pain is in your head, and b. even if your pain is psychosomatic, that doesn't mean you're not feeling it (useful for other conditions).
I've not listened to all the meditation tracks from this book as yet, but they seem good. Vidyamala Birch, who guides the meditations has a musical voice with an RP English accent.
So far I prefer the meditations from the other book more, but I think that's because the man leaves more gaps in between talking to focus on the meditation. If you're new to meditation, or suffer from chronic pain quite severely, you might find it more helpful to have a more active guide.
Learn to Relax series, and Self-Hypnosis series - tracks from the Optimum Health Clinic.
If you are part of the OHC, they have some great tracks around relaxation.
I personally prefer the self-hypnosis ones, because I find the woman's voice (RP English) there more relaxing than the man's (RP English), and because the self-hypnosis tracks involve more visualisation, so I'm less likely to get bored and distracted.
The OHC is a private clinic that specialises in ME/CFS and Fibromyalgia, so these tracks are targeted specifically to sufferers of those conditions, but to get access to these tracks you have to have taken part in some form of their therapy, which isn't cheap.
I personally have found the OHC to be very helpful; the psychologists have all suffered from ME/CFS, it was founded by a sufferer, and they are able to help you from home via phone or videocall, but it is an expensive route to go, and there are plenty of other tracks and help available if you're not able to afford their prices.
Please don't feel that you need to spend a lot of money in order to recover. If you're able to afford more support, fantastic. If not, then that is what blogs like this are for!
I will leave it there for today, but there's still lots of tips to go, so check back next time for information!
PART ONE - PART TWO - PART THREE - PART FOUR