Sunday, 30 April 2017

ME Symptoms & Tips: Fatigue - Part 3


Hello again my lovely loves!

We’ve covered the types of tiredness, and the best ways to get decent rest, so let’s jump right into our next lot of tips for fighting fatigue! 

4. Rests rather than Naps

It can be pretty hard to get through the day without falling asleep sometimes, but, generally speaking, try to rest rather than nap.
Napping can risk messing up your circadian rhythms, especially if it happens after 4pm, and means that it can be even more difficult to sleep at night.

Having regular, good quality rests (as outlined in my previous post) can make all the difference, and allow you to build up energy throughout the day without risking terrible insomnia.

If you nap now and again after a particularly trying day, or a poor night’s sleep, then your body clearly needs it, so it’s nothing to worry about.

Sometimes naps are necessary. That's fine.

If you’re resting correctly and regularly, and you still fall asleep, even on good days, then consider resting more often. Which leads quite nicely into my next point, getting your resting ratio sorted.

5. Resting ratio

Once you've got the quality of your rests sorted, the next thing is sorting out the quantity.
The likelihood is that the amount of rest you need is going to be more than you want to. But, to be fair, having to rest at all is really annoying, so that's probably not a shock.

An NHS specialist nurse once told me that the ideal rest is 10 minutes out of every hour.
I was really upset at this number, because to me it seemed really high at the time, but to be honest, that's actually not very much at all.

I tried this level, and I continued to spiral down, because it just wasn't enough rest for my body. At this point, I was very, very sick, had become completely housebound, and being bed-bound was starting to look more and more likely.

Things got bad

My step-aunt, who has ME, along with three of her kids, told me that what I should really be doing to start with is resting twice the amount of any activity I did.
Only after keeping my energy levels stable for four weeks should I even think of dropping that level down, and, even then, I should only drop down a tiny bit at a time, continuing to hold any changes for four weeks to see if it had any negative effects.

This was shocking to me, and the unfairness of my situation made me angry and heartbroken for at least two weeks, but Ceri and my cousins have recovered to the point where they lead basically normal lives, and I was far more frightened than I was angry, so I tried it.

Best decision I ever made.

A month into my new resting ratio regime my brain fog, pain and nausea started to lessen ever so slightly. Those have continued to drop to the point where they tend to be signals that I've overdone it, or should rest, rather than constant companions.

The fatigue has taken longer (that's always been my worst symptom), but it too has become more manageable over time, and I find myself slowly able to do little things I couldn't again. It's still bad, don't get me wrong, but I feel like a tired version of me now, not like a half-absent ghost human.

I have been so, so careful and have stuck as much as I can to the idea of a resting ratio for the past two years. I've been slow in dropping down my ratio, and didn't drop it all for at least a year, because four weeks wasn't long enough at each stage for my body to take the adjustment, but I've come on leaps and bounds.

My sleep is better, now that I'm balancing activity with rest better, to make sure I'm not overstimulated at night.
I no longer feel constantly wired, and while I still have up and downs and crashes (that's the nature of the illness), I'm much more able to notice when I need to ease off and rest than I was before.
Looking at myself now, and myself two years ago is like looking at a different person. To the outside I'm still pretty bad, but I remember just how bad it got, and this is so much better.

It can be hard to remember to put long term improvement over short term achievement, but I remember how bad I was, and I don't want to feel like that again.

I realise that a resting regime as extreme as this one might not be possible for everyone, but I'd urge sufferers to try, especially if you're house or bed bound.
Even if you're not, having a resting structure has helped me so much that I can't help but think it would be beneficial to so many more sufferers.

I don't know everyone's individual situation, and maybe you have a system already in place, but if you have the opportunity to try it, then I'd really recommend doing so. Try it for a month or two, and see if it helps.

If you don't want to do 2:1 (twice the amount of resting to activity), then start at 1:1, or 0.5:1, although, frankly, the higher the resting levels the better.

If you do go for a higher level, and are able to, try adding some stretches within your abilities to your routine, just to keep your muscles flexible and strong after resting so much.

(If you're at a higher level of functioning and able to work, just try resting an extra five minutes every hour on top of your current system, and do a little meditation track, at work, at home, wherever. See if it improves things.)

Be sensible with it too; stick to it as much as you can, but don't use it as something to beat yourself up with either. 

It's not easy, and frankly makes you want to scream to begin with, but over time it becomes more comfortable until eventually it's a comfort, knowing that you have a system that works. Besides, the easing of symptoms is a powerful motivator, and doing this definitely eased mine.

Remember, that specialist nurse said that ten minutes of rest an hour was what a sufferer should be doing. And for me, that's my ultimate goal. And if you're really struggling with your fatigue... maybe it should be for you too.

6. Regulate your temperature

It might seem really obvious to some sufferers already, but it took me AGES to realise just how much my temperature effects my energy levels. 

If I’m cold, I feel so much more tired, and it takes ages to shake. To be fair, being really hot does the same thing, so winter and summer are always a bit of a battle trying to find that happy medium.

For keeping warm, try heat holder socks, silk skiing socks, and many, many layers. Break out that onesie if you have to.

All of the layers

For keeping cool, invest in a decent, low-noise fan (I saved up for a Dyson one that I can use as a heater in winter as well), lots of damp flannels, and a cooling gel pillow, like Chillow.

7. Grazing

If eating makes you feel tired (a fairly common ME/CFS symptom), then it's worth thinking about changing the way you eat.

Having six small meals instead of three large ones has really helped me battle this, as well as reducing my nausea.
There's less for my body to digest at once so it's not sending all of my energy to my guts, and I keep a steady level of fuel going in most of the time, so it stops me having energy crashes because of low blood sugar.

Keeping healthy snacks around can also be helpful. I like salted almonds: high in protein, and the salt helps balance my blood sugar out quicker than a dose of sugar.

For more information on a healthy ME diet check out my post, Cheese vs Freedom.


I’ll leave it there today, but check back next week for my last lot of tips. I’ll be talking about finding your baseline, making judgement calls in pacing, and a couple of other things.
See you then!


Monday, 24 April 2017

ME Symptoms & Tips: Fatigue - Part 2

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 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

 the voice.

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!



Sunday, 23 April 2017

ME Symptoms & Tips: Fatigue - Part One


Hello my lovely loves!

This is the first piece in a series I've been meaning to write ever since I started this blog. I really want to discuss ME/CFS symptoms individually, to try and explain how they feel to non-sufferers, and how I combat them for the fellow Spoonies.

It's taken a while to get to this point, partly because I felt there were other things I had to discuss before this would make sense, but also because it's really, really difficult to find the words to express how specific symptoms feel.
It doesn't really help that the first symptom that really needs to be addressed is fatigue, and this is one that's really difficult to put into words. I will try, though!

For my fellow Spoonies, the first part of this post is going to be me trying to get across how hard things are. You might find that helpful, but equally you might also find that upsetting, so if you'd rather skip that part and go straight to the section on coping mechanisms, then I will be posting the first tips section tomorrow. You can sign up for email notifications of when I post if you like too.

Most sufferers have a go-to metaphor for trying to explain ME/CFS fatigue. ME/CFS fatigue is not like normal tiredness, but we're always trying to find understandable ways to explain it to non-sufferers. 
I've heard someone liken the difference by comparing walking to the shop to doing a marathon, riding their bike in the wrong gear, or trying to walk backwards through treacle with a hangover. 
I've said it's like having a constant wine hangover, like having weights tied to your limbs or being a phone with a broken battery.
All of these are pretty spot on, but for me the one thing they miss out on is the relentlessness of the fatigue. 
Those are all great to explain the bizarre "dear-god-why-is-everything-so-difficult-now" feeling in the short term, in a short, relatively light-hearted way, but it doesn't really explain the full extent of the problem, because all over those things end.
Hangovers go away, ME/CFS doesn't.

I've always kind of thought of Spoonies in general as a bit like Sisyphus, the character in Greek mythology who is sentenced to push a huge boulder up a hill in the afterlife for all eternity, only to watch it roll down again and again, ready for the next days work.

From Gizmodo

(Although actually typing that has made me realise that the reason people use short, relatively light-hearted metaphors is probably so they don't sound that over dramatic.)

For once, though, I'm going to use the metaphor that I have never said. The one I've always thought but never felt comfortable actually saying to anyone else. It's really more of a story, so you'll have to bear with me, I promise there's a reason to making it so long winded.

Imagine this:

You've had a hell of a day. It’s 8pm, it's absolutely bucketing it down, you’ve just left work, and you've got to take public transport home.

You've had to work late because there's a big deadline coming up and all of the other people who are meant to be working on it have come down with this horrible flu bug that's going around, so you’ve ended up doing about three people’s work for the last couple of weeks. 

This is bloody typical, because they were barely pulling their weight before so you’ve been juggling everything to make the whole sodding thing work for the last couple of months and you’re so, so sick of it. But it’s important, because you need this job, and the pressure is there to keep it (despite all the back breaking work, you’re so skint it’s unbelievable), so you’re hanging on, and working through it as best you can. 

Your boss has had a terrible day too, and, as the only person in the firing line, you really don’t want to mess this up. It's a barrage of constant questions and emails and calls and jobs to do, and you're not quite sure how you're going to manage.

You've a horrible feeling that you're coming down with the bug too, because you're head is pounding and your eyes are scratchy and everything just aches. You were hoping that it was just the wine from the boring work dinner you had to go to from the (late, late, late) night before, but the odd disconnected feeling hasn’t left all day, moving feels difficult, and your concentration is just getting worse. You can barely think.

There’s no way you can get ill now because there’s so much work ahead of you, and you’re the only one who’s still upright. Just.

The walk to bus stop is frigid and wet and there's no room left under the shelter so you have to stand in the rain waiting for your bus.The first two buses are too full to let you on and they drive right past, splashing your legs from dirty, freezing puddles.You can feel the water trickle through the insides of your shoes.

It's cold and wet and dark, and, when you finally get on the bus, it has that horrible warm, dampness that feels like germs, and getting sick, and smells like B.O. and passive aggression. There’s a child screaming and they just. Won’t. Stop. 

There are no seats left and you’re jammed against several other commuters, who seem as happy about it as you are. It’s almost a disappointment you’re not packed in more tightly, because then maybe you could rely on the crush to hold you up.
You’re now sweaty, even though you still feel chilled, and it feels disgusting. Your head keeps pounding.

The bus terminates before it’s supposed to, but there’s no bus stop, and you're fed up of standing and waiting, so you trudge on home. Your legs hurt. Everything hurts.

You walk down the cold street, and your hair is plastered to your head because your umbrella broke on the way into work, and you had to work through lunch so you didn’t replace it. You didn’t really have the spare arm to carry one anyway. The cold water is making your neck ache worse, and your bags feel like they're getting progressively heavier. Your wet shoes are chafing your feet.

You walk up to your cold, dark house. No one is in, and all you want to do is crawl into bed and never leave.
You look for your keys, but when you look through your bag... you can’t find them. You look through everything frantically, before realising you must have left them at work. 

It’s cold, and raining, and you’re damp, shivering, sweaty, achey, weighed down and so, so exhausted that you can barely think or keep yourself standing, but if you want to go inside and lie down, you’re going to have to go back and do the whole thing again. 

That. That instant when you don’t know whether to cry, or laugh hysterically, or scream, or pass out, that’s how ME/CFS feels when you wake up in the morning. When you’ve just slept.
Like you’ve already run a thousand marathons, with a thousand hangovers, and dear god you are so tired of it you don’t know how you’ll make it through the day. It’s not the tiredness that gets you. It’s that it never goes away.
Physical tiredness is hard, but the kind of bone-deep, soul-deep exhaustion that comes of being exhausted all the time is in a league all of it's own.




It doesn’t have to be like that, and just because it has, doesn’t mean it always will. 

To my Spoonies, we can beat this. You know that it really is that hard, and sometimes, if you’ve pushed yourself, or something unexpected has happen, it’s even worse. I’ve spoken about that before, and I will again.
But, there are ways to beat back the tiredness, the never-ending exhaustion. Hopefully, one day it'll go completely, but in the mean time we can definitely make it more manageable, so that each day the burden gets easier to bear, until the load gets lightened.

And now I've thoroughly depressed everyone, here's a puppy.

Ah, Google. You never let me down. (Except when you don't pay your taxes.)

I'll see you tomorrow for the first lot of tips.