ME symptoms & tips: Enjoying media content with ME

Hello my lovely loves!

One of the things I've struggled most with during my recovery is not having the energy to watch TV, films or read.

I used to be an avid reader, loved film nights, and would watch any crime drama going. Basically, I'm a sucker for a story.

Having ME/CFS has seriously impacted that because the stimulus provided by media content is exhausting, and would often mean I'd get overstimulated and not be able to sleep.

However, not being able to distract myself from my situation at all wasn't helpful for my mood, so I've slowly worked out ways to allow me to enjoy far off places and new characters without completely wiping myself out.

With my resting ratio slowly allowing me to recoup more energy and heal, I've been able to go from only being able to read small amounts on my phone (and no TV or film whatsoever) to being able to read the occasional physical book and catch up on some of the programmes or films I've missed over the last few years (even if it means I have to do it in manageable chunks on my phone).

Here is what I've learned so far.

The sympathetic nervous system

The first and most important thing to understand is that your body doesn't understand the difference between fantasy and reality. You do, but your body doesn't.

Your sympathetic nervous system is the part of your body that deals with fight or flight (and the less mentioned, but no less important freeze). When you're in danger it's this part of your body that triggers an adrenaline response, and allows you to react in a heightened state to protect yourself. It's linked to emotions like fear, aggression, anxiety and excitement.

The key thing is, this response can be triggered regardless of whether the danger is real or not. It's kind of a evolutionary "better safe than sorry". Better that you realise that the shadow in the corner is just a coat on a chair (and not an assailant) after you're primed to deal with danger, rather than spending time assessing and having to summon the response in the potentially critical first moments.

That's why people get frightened and feel jumpy during and after a horror movie, and that's why a fight scene puts you at the edge of your seat. Your body is responding to a potential threat.

Pretty much all media content makers use this reaction deliberately to manipulate the viewer's response. After all, the whole point of a story is to get you to feel something.

The storyline itself is obviously one way of doing this - an emotional response to the character's plight etc - but with film and television, the way the images are shot, edited, and given sound is all specifically designed to make you react in the strongest possible way.

This is not inherently a bad thing. Frankly, it usually makes for a bloody good story, and people's sympathetic nervous systems are constantly in a state of flux anyway, so it's not usually damaging.

The problem comes when your body's reaction to adrenaline is skewed already; in this case, because you're ill. 

Most people can calm from an adrenaline response quickly, people with ME/CFS however don't seem to. There's all sorts of theories as to why that is, depending on what people think causes ME, but for the sake of keeping this post as succinct as possible, I won’t go into it at the moment.

In any case, adrenaline responses use up massive amounts of energy and they suppress the body's ability to rest and heal.

(This is one area where psychological tools are actually useful for ME patients, because they can keep you calm, and teach you how to lower your adrenaline levels. The lower your levels, the easier it is for the body to heal itself.)

It stands to reason, therefore, that the best way to be able to enjoy media, of any kind, is to lower the chance of an adrenaline response, so you use less energy.

Suspense is your enemy

You’ve doubtless heard of Alfred Hitchcock. Much of his success is owed to him being the “Master of Suspense”. He was amazing at keeping his audiences at the edge of their seats, just by drawing out an unresolved plot-line at the perfect rate. From our point of view, that’s a extended adrenaline response.

If you don’t know what’s going to happen, but there’s some form of foreboding that tells you something will, then it’s going to trigger your fight or flight response, and you’re going to be flooded with adrenaline. 

It’s probably really going to annoy you that the best way to counter this, is to find out what happens, before you watch/read/listen to your media content. If you know the basic story outline, it prevents such a dramatic adrenal response, and is therefore much less exhausting.

Basically, you need to read spoilers. 

Film and TV are fairly easy to find, especially for more mainstream offerings. Books are more difficult. Again, famous ones often have a breakdown online, but a book that’s just been released is difficult to find a synopsis for. I really wish there was a website dedicated for this, because there’s been a number of times where I’ve had to wait to read something until someone is kind enough to make a wikipedia page about it’s storyline. 

Frankly, this sucks, because, for me, half the fun of a good story, is not knowing the ending. (Unless you’re one of those strange people who likes to read the end of a book before starting.)

But, if it’s a choice between knowing what’s going to happen and being able to watch an episode of Game of Thrones, or not being able to watch it all, then I know which one I’m going to choose.

It also helps with this next tip.

Bite size chunks

I used to regularly stay up most of the night reading a book, unable to put it down until I found out what happened. Obviously, now this is a MONUMENTALLY BAD IDEA. I need sleep or I’m not going to be able to function at all for several days, and I’m going to feel awful the whole time.

It’s much more healthy for sufferers to break up your books, shows or films into manageable chunks. It gives you time to process what you’ve taken in, and allows you to rest more, so you won’t get overstimulated. (And hopefully that means you’ll be able to sleep more easily.)

This is really difficult to do, because if you’re enjoying something, you want to keep on enjoying it. Fortunately, finding out the basic storyline gives you a couple of advantages for this.

1. If you already know roughly what’s going to happen, you’re not going to lie in bed all night wondering what’s going to happen. We’ve all been there.

2. You’re much less likely to want to read/watch things all night. There's no need. You know what happens.

3. You'll know a good place in the storyline to stop. Like a checkpoint in a video game. I generally try to stop whatever I’m reading or watching on a high. There’s no sense in feeling thoroughly depressed until you next start up the story again.

It'll take time, and trial and error, to work out what is the amount of media you can manage at one time, and in one day/week, without getting overstimulated. I started at about 5 minutes at a time, for no more than 15 minutes a day, and then slowly increased it over time, with that help of the other tips I've mentioned.

I can now watch up to three hours in a week (although frankly it’s often much, much less than this), split into sections of different times depending on how I’m feeling and what I’m watching.

It differs depending on the type of content; reading may be easier or harder for you than watching something. Listening to music will be its own monster. Again, the genre will have an effect on that too.

I can read on my phone more than I can watch programmes or films (again on my phone), and I can watch more than I can read physical books. I can do all three more than listen to music. Radio is still a no-no, especially talk radio, but I don't have to instantly leave a room where a radio is on as often now, so I'll take that as a win. (I seem to do best with visual cues basically.)

Work with your resting ratio

Similarly, if you’re using a resting ratio (and I’d really recommend it), then make sure to try and stick to it when you’re watching or reading. It can be incredibly difficult when you’re really into a story, but it’s worth it in the long run. 

Set timers if you struggle to remember to stop and rest.

As time goes on and you get stronger, then hopefully you should be able to watch or read and listen in longer and longer stretches.

Emotional response 

Something that you also have to be aware of is your emotional response to a story or to music. 

Everyone has at least one film that completely blindsided you with emotions; those films that left you feeling completely drained, and quite possibly depressed, for days afterwards. 

Mine is City of Angels. It took me several years to forgive my Mum for encouraging me to watch that cry fest. Although, to be fair, she hadn't watched it either, and I don’t think she was anticipating the raging ball of tears and snot I became during that film. 

Even that paled in comparison to my response to the His Dark Materials series by Philip Pullman. I cried so much after the Amber Spyglass I actually wrote a new ending and wedged it in the book to make myself feel better.

Emotions, like your fight or flight response, use energy, so if you’re feeling a bit tired but want to watch something, choose something light-hearted rather than Angela’s Ashes or something.

Also, if you’re a sufferer of ME/CFS, you’ve already got quite a lot on your plate, so think about what kind of thing you actually want to watch. I thought I might use my time housebound to read the classics, but most of them are desperately sad, and I don’t really want to deal with unhappy endings at the moment.

You might find an angst-fest cathartic, and that's fine, but just be aware of what you’re signing up for, and that it's probably going to take more energy.

I started with clips of my favourite comedians and went from there.

The devil you know

When starting back into media content, or attempting to enjoy it on a more regular basis, it’s better to start with old favourites. You know the story, you’re familiar with the emotions it evokes, and you have that lovely sense of seeing an old friend. It’s basically all of the enjoyment with none of the added stresses. 

As I said, I started off with clips from comedians I know and like for TV, and for books I chose Harry Potter. Because I could probably explain the plot of all seven books word for word at this point.

It was also a great test for me to see what sort of level I was at. I knew how long it would’ve taken me to read the series before I got sick (less than a week), so knowing that it took sixteen weeks allowed me to estimate my functioning level at the time.

The strangest thing is my actual reading speed hasn’t decreased. I still read very fast, but the amount of time I’m able to read without getting sensory overload is much, much shorter. Before I could read an entire book in one stretch, but now I’m lucky if I can do 15 minutes without a break. Brain fog hits and then the words stop making sense, even if I was able to speed read 5 minutes prior.

Over time I’ve been able to slowly watch longer clips, and upgrade to watching short sketch shows. The leap to film was a bit more difficult, but I broke the Muppet Christmas Carol into pieces and watched as much as a I could. 

The first year I tried I couldn’t watch the whole thing, but last Christmas I finally managed it. (I then had the Marley & Marley song stuck in my head for about three days, but that’s par for the course.)

Quality film at it's finest

Timing

Most ME sufferers have a time of the day that they feel slightly more able. It’s good to work with this time, but it’s not necessarily going to be the best time for watching TV or film, or even reading a particularly exciting book. 

Even though my most energetic (lol “energetic") time is the afternoon, I try to watch anything exciting in the morning, and definitely not after early afternoon, because I need time to process what I’ve taken in. If I haven’t finished watching I’ll save it for another day.

If I try and watch something too late in the day it’s still running though my head when I settle down and I find it much more difficult to fall asleep. 

Physical books have a little more leeway for me, but I still leave them downstairs when I go up at night. I can read on my phone before bed, but I tend to stick to short stories or things I’ve already read in the past.

I also avoid news before bed, because I don’t want to get really angry at things before I have to sleep, or I’ll just lie there mentally lecturing various people on why they’re wrong instead of resting.

Try not to multitask

I used to put a DVD or music on while I worked constantly before I got sick. It allowed me to sort of zone into this wonderful state where I’d be relaxed enough to get loads done, but also let me feel like I wasn’t doing much at all.

This Does Not Work with ME/CFS.

In my experience (and probably in yours) attempting to split your attention is a one way ticket to terrible Brain Fog. To me it feels a bit like two completely different songs are playing really loudly at the same time, and I can’t do anything except want to put my hands over my ears until they stop.

If you know that you have the same issue, great, but you should probably make other people aware of that too. 

If you’ve got a loved one who likes to ask you many, many questions about various characters in a show, or tell you about their day when you’re watching a film, then you’re going to end up feeling awful when you try to concentrate on two things at once.

I know it’s difficult because you don’t want to seem rude, and that’s fine. But the person you love needs to understand just how much of your energy gets used for a task like this. 

Explain the song analogy, maybe show them this post if you want (hi!), but only being able to concentrate on one thing at once is not your fault, and it doesn’t mean you don’t want to spend time with someone or hear about their day. 

You just need to hear about what Keith said to Janet in Accounting at a time when you’re not also watching pictures flash in front of you, trying to follow a character’s emotional journey, and listening to a soundtrack specifically designed to make you reach a state of fight or flight.

The Importance of Eye Movement

Something that I stumbled across that’s been really helpful, is limiting the amount of eye movement you have to do in order to enjoy your book or TV or film.

I spoke before about how when you’re in a car you’re not aware of all the tiny little adjustments and decisions you’re subconsciously making to compensate for (and anticipate) the movement of the vehicle, as well as the sensory input of the world rushing by. This is similar.

The more your eye has to move across a page or a screen, and the more that’s in your peripheral vision, the more tired you’re going to get.

You might not consciously be thinking about the words on the opposite page of your book, or the plant stood next to the TV, but your brain is going to be constantly trying to make sense of everything around you, and that uses energy. Your filters are compromised and anything extra will tire you.

There are a few ways to combat this.

1. When watching something, try it on a smaller screen.

I can’t watch things on the actual TV yet. Even the strain of watching things move across the entire width of my laptop screen is tiring.

I watch things on my iPhone, and I’ve slowly begun to watch short You Tube videos on my iPad Mini, as a way to eventually make it onto larger screens.  I’ve also bought a portable DVD player to eventually use for my much neglected DVD collection.

The plus side for this is that smaller-screened devices generally cost less. The downside is that most people have massive TVs. It’s something to work towards though!

2. Keep a calm space around wherever you’ll be watching media. 

If you are able to watch on a larger screen (good on you!) don’t have too much around the TV, especially anything that moves. Extra movement is definitely going to draw your attention, and split attention is a recipe for brain fog. 

Shut curtains if you’ve got a pathway outside where your TV is. Shut windows to stop breezes moving things. Do what you have to do to watch that episode of Midsomer Murders.

3. Cover extra words on a page.

Get a piece or two of thick black paper or thin card, and cover the page you’re not reading. You can even cover half the page you are reading, so you can only see a few sentences at a time. This is what I did to train myself to be able to read physical books again.

Black paper isn’t necessary, but it recedes visually, so it’s easier for your brain to ignore than white or a colour. It also won’t show any of the words through it.

4. Wear headphones

Whether you’re watching something or listening to music, it’s much easier to concentrate on what you’re doing if you can’t hear other things around you. Again, splitting your attention is going to tire you much more quickly.

5. Accessibility features

Lots of devices for reading have great accessibility features that allow you to change the background colour, font, text size, and even reverse the screen so you see white-on-black, instead of black-on-white. 

Play around and see what works for you. When you get sick and have to read something, you realise how much of a difference a good layout and an easy-to-read font makes.

Doing these things made a genuinely massive difference to me, and I can’t recommend it enough if you’re trying to enjoy more media.

———

So that’s what I’ve learned so far about trying to enjoy media with ME. I really hope you found it interesting and, more importantly, helpful. 

May you never miss another episode of Game of Thrones.

H

A Busy October and a Surprisingly Okay Sickmas

Hello my lovely loves!

It's been a little while since I've been able to write a post beyond a few words, and I miss it more than I thought I would!
This last month has been intense, and, to be perfectly honest, I was a bit nervous about how I'd get on, but it's actually gone pretty well!

October's always pretty busy (it's my birthday on the 6th, so there's usually a lot of excitement, and often visits from people), but this year was extra intense. Visits from family, a wedding via Skype (plus the emotions of not being able to go myself), a home visit from one of my many medical professionals, Christmas card making and Halloween Costume Funtimes meant that I had to be very, very careful indeed.
I had to make sure I didn't have my my usual hypnotherapy and counselling sessions for the whole month, just to make it even slightly possible. But, to my surprise, I managed every single thing bar one family visit, and hopefully that'll be happening soon!

I'm not going to discuss the month in too much detail (and you already know at least part of it, as I've already posted about the charity Christmas cards I've made), but the main things were; I turned 30, I had a home visit from my ME specialist nurse, and I had my anniversary of getting sick (which I usually call Sickmas) on the first of November. I feel like those all tie in pretty closely, because they're all things that make me look back on my achievements in the last year or so.

Last year, all of these things made me feel pretty awful. Although I had managed to stop my ME/CFS worsening, that was pretty much all that could be said. I had to cancel creating Christmas cards to sell, which made me very low, and, while I'd won the Midsomer Murders Cluedo competition, that couldn't stop the first anniversary of being housebound, and the 3rd year of being ill, hitting me pretty hard.

This year, I've managed to achieve a lot, lot more, and it feels wonderful. Don't get me wrong, I still had a few rounds of tears; while my friends do amazing things in their careers, visit wonderful places, get married, buy houses, and have children, I'm stuck here unable to leave the house, and on occasion my bed, and that feeling of being left behind hurts like nothing I could possibly explain. 
But comparing this year to last year? (Which, by the way, is otherwise known as comparing my sick self to my sick self instead of to my well self, or other people.) In that case... I'm kind of rocking it.

Mum and I made a list of everything I've achieved this year. It's not been easy, and of course every single thing has had Payback following it, but I've managed it. 
I've had some scary moments where I wasn't sure how I was going to make it through the Payback (after my birthday, which I dressed up for, I had a day where I wasn't sure I was going to be able to wash or not, and that was absolutely terrifying), but... I did get through it. And all without leaving the house.

So... well done me. And thanks to you all, for supporting me. There will be more posts to catch up on most of the individual things, but until then, I hope you enjoy looking through this list.

H


Bounced back from blood drain relapse

Embroidery for Catie and Ben

Making Tiny Hannah 

Making Tiny Hannah introductory video

Sending TH on adventures to Edinburgh, Derby, London, Richmond and Venice (posts to come)

Joining Elevate, the local ME group, via Facebook

Taking part in Millions Missing (blog post to come)

Interviews with newspapers for Midsummer murders Cluedo (fame!)

Taking part (and winning) top vintage competition and therefore... 

Winning my friends a honeymoon to Venice

Managing to create Christmas cards

Writing a poem for my friends wedding (blog post to come)

Writing an article for the Telegraph (fame again!)

Being quoted on BBC radio Scotland (fame some more!)

(Getting a request from the Jeremy Kyle show - and avoiding it)

Being featured on The Mighty (that fame, it just keeps on coming)

Writing a post for the ME Awareness blog, that then got featured on the ME Action website

Creating a Maleficent Halloween costume

Finishing and giving the Dear Ethan project books to Ethan and Kerry

Becoming more positive

Helping to design my mum's studio

Spending one night on my own in the house (bigger deal than it sounds)

Learning to make corn dollies

Successfully having one visit per month from a friend

Skyping my friend's wedding

Watching the whole of How to train your dragon 2 (in stages)

Advised other sufferers of ME

Joined the Chronic Illness Bloggers via Facebook

Did a product review, like a proper blogger

Worked on my blog 

Worked on my calligraphy and lettering skills

Used the sewing machine once (without wearing ear defenders!)

Dropped down my antidepressants by one quarter

Had one shower (they became extra difficult after the Blood Drain for some reason, so it was sink washes and weekly/biweekly baths for some time)

Dressed up for my birthday

Carved my first pumpkin since 2013!

Read an actual book

Learnt to say "no"

Learnt to say when I'd had enough and trusted that my friends would be happy with this. (Thanks, guys.)

The Good, the Bad, and the Payback

Hello my lovely people,

Firstly, thank you so much for the lovely feedback we've had about mum's post. Despite her worries, it's gone down a treat, and everyone seemed to enjoy it (even if it made them cry!). She truly is a wonder.

As you most likely remember, I wrote a post going through how the average good day looks for me in A Day in the Life.

At the time I wasn't ready to talk about how a bad day looks, and how the Payback that surrounds those bad days feels.

This post is about that.

As such I should probably warn you that it's not the happiest of posts, because the bad days can be pretty horrific, and there's not really a way to sugarcoat something like this. But I think it's good to talk about it. It's quite cathartic for me, and also gives you an idea of why I'm so very strict with myself all the time. 

Payback is actually quite a hard thing to talk/write about. This is partially because when you're during a good period the last thing you want to do is hash through the bad times, but also because it's genuinely quite hard to remember the details.

Because of the worsening cognitive symptoms of CFS/ME during these dips, your memory gets considerably worse, so after you start to come out of a dip you are mostly left with a general feeling of "oh dear god I hope that never happens again".

I can't actually remember that much about when I first got ill for the same reason. I know that it's the worst I've ever felt, but the details are all rather fuzzy, much like when you're delirious with a fever.

(There is part of me that wonders if it's also the brain and body trying to protect itself, like the way the body releases chemicals when women give birth so they can't remember just how bad it was. They know it was bad, and have no qualms in telling people that it's the most painful experience of their life, but they'll still do it again because their bodies protect them from it, thus ensuring the continuation of the species. Yay science!)

The only way I've managed to write this is by, a. writing it when I'm just over the worst (fingers crossed!) of the Payback from my last drop having donated blood to a ME/CFS study (won’t be doing THAT again!), and b. by trying to think about how it felt when it was happening and then trying to haltingly verbalise it to my mum at the time.

Payback is generally just rather dryly described as "a worsening of symptoms", and yes, it is that, but it's also a lot more.

It's different for every sufferer depends on their weaknesses, different things will trigger it, and depending on their usual level and exactly how far they've gone overboard it'll cause a different level of energy drop.

If Payback causes sufferers to drop between ten and twenty percent for example, then those who are already lower down that scale are at greater risk of the consequences. 

(That doesn't, however, mean that those further up the scale aren't suffering and can't put themselves further down the scale of they're not careful. Sometimes sufferers at the higher functioning levels suffer more from it because they're more likely (and more able) to push the boundaries further.)

Payback has its own levels. My bad days can be needing to stay in bed more, or needing to do less, or it can be a full blown Payback Period. (It's basically anything from the worst case scenario upwards.)

A full case of Payback for me goes in stages. It rarely hits straight away, so there's a very odd moment when I can feel it's coming.

My energy levels start to drop, my limbs start to ache like I've got flu, and I start to feel really restless and uncomfortable in my skin. (I get this when I have flu as well, the best I've managed to describe it is "my skin feels weird". The bard I am not.)

It's not unlike the moment you move and you realise your leg is numb and you've got a short amount of time before you get pins and needles but there's nothing you can do about it.

This stage is like the herald announcing things are about to get serious, so I try and warn my parents, get to bed, and say anything that needs saying before I reach the next stage.

At this point the energy drop starts to gain momentum, the muscle aches get worse and I start to have difficulty thinking, moving and speaking. 

This is very frightening because you're just aware enough to know that you're not fully functioning. 

In my mind it's like the part of your brain you have no control over shuts everything down apart from your most basic functions (breathing, organ function), so you can't really do anything that's not completely necessary to your immediate survival.  

(To my fellow geeks, think rerouting all remaining power to basic life support systems. Fine on a spaceship, terrifying in a human.)
I call this stage "Emergency Shutdown."

Pretty much literally, the only thing you can do at this point is rest and wait for your body to gain enough energy to come out of the danger zone.

It's worth reminding you guys that I'm not actually in danger unless I keep trying to push it at this point (although frankly I'm not sure how I could). I'd pass out first, and that'd give me time to get energy back. And I've never let it get to that point.

(Note: some sufferers symptoms include passing out on a fairly regular basis, it doesn't mean they're at the same stage I would have to be to do so, but obviously they should rest to avoid this.)

Payback, as a general rule, is a horrible, harrowing experience, but it's not dangerous if handled correctly.

The next few days is pretty much guaranteed to be spent in bed. During this time I'll be extra tired, have achy limbs and joints, have bad headaches, and be less able to move and speak. I'll tire much quicker and do much less.

Despite the extra tiredness I can often have sleep disturbances at this time as well.

This is the bit that I'm least able to remember with any clarity. Even now it's hard for me to remember what happened last time and that was two weeks ago.

The most I'm able to do during these times is read on my phone or go on social media (I've said before that those are my least tiring activities).

Washing becomes difficult. I'll normally try to wash in the sink everyday and get my hair washed every other because I hate feeling dirty and it helps relax me and keep me sleeping well. Showers and baths are a complete no-no.

In the evening mum will wash my face and hands for me and bring my electric toothbrush through so I don't have to get out of bed unnecessarily.

There's not really a set schedule on bad days because there's no way of knowing what level I'll be at. 

We keep food times the same, sometimes with more snack in between, to keep my blood sugar levels as stable as possible. Any blood sugar drops affect me much more on bad days so we have to be extra careful.

Bedtimes are extra early, and despite my usual assertion that it's bad to mess with your circadian rhythms by sleeping in the day, I'll normally nap in the afternoon and pass most of the day in a haze of rests and relaxation tracks.

As the days pass and I build energy, the worsened symptoms slowly go. The movement and speech tends to come back first, although I'm fuzzy headed for a while after, then the aches recede until it's back to the normal symptom level (these things never go away completely).

I'll slowly start spending some time downstairs, building up as I get stronger.

The tiredness stays the longest, and after the official Payback period is over, I'll find myself at a much lower ability and energy level than I was before. Depending on the Payback severity this can take a week, a month, or several to get back to how I was. 

Emotionally this is the hardest part. When I'm in the depths of the Payback period, I'm too sick and exhausted to feel upset or angry or frustrated. The return of these feelings is actually a sign of improvement, but that doesn't really make it easier.

Even though I always fear it won't, I know on some level that the worst of the Payback will pass, but the effort it takes to build myself up afterwards is massive, and another round of payback can happen at any time and scupper my improvements.

I get so frustrated and it makes me feel a bit like Sisyphus, pushing the same boulder up a hill only to watch it roll down again, but it's only by making these mistakes (be they emotional or physical) that I've learned what my triggers are and how to avoid them.

As I said, Payback is always on a sliding scale, but I'm slowly suffering from these massive Payback period less and less (touch wood!). 

I'll often have worse headaches or join pain and tiredness, but not to the same extent I used to.

Hopefully over time I'll experience it less and less and as I improve it'll become even more difficult to remember how it felt.

Eventually, this whole experience will be nothing but a distant memory.

A Day in the Life

Hello!

I know it's been ages since I've posted properly, but it's not been an easy few weeks.

We think we've worked out why I've been feeling so pants, but it's a bit complicated, and we don't know for sure. 

If our suspicions are correct (hopefully they are because I have no idea what else it could be), I'll go into it in more depth then, rather than risk giving false information now.

It’s ME Awareness week from 10th-17-th May, and the chairman of the ME Association, Neil Riley, wrote a message comparing what others see of our illness as “the tip of the iceberg” so, while I play the waiting game, I thought I'd tell you how my average good day looks.

I know I've told you before that I have to rest eight hours a day to function and that I can't do more than a certain amount within my activity times, but it's all a bit abstract so I thought I'd lay it out a bit clearer.

I'll also include some of my other coping mechanisms and tools so you can see how I think about things and manage the tightrope walk a little better.

I'm going to warn you now though, as I do rest a lot, parts of this will seem pretty repetitive, and/or boring. That’s because it is, but unfortunately there’s not really anything I can do about that.

Although I’ve mentioned before that my level is around 15%, that’s within the guidelines for ME sufferers, as judged on the scale included in “Severe ME/CFS: A guide to living" by Emily Collingridge.

In terms of comparing my daily activity with someone healthy at my age, it’s more like 5%. 

For example, reading the seven Harry Potter books would have taken me about a week when I was well. I did the same thing recently, but it took me 16 weeks.

Regardless of the ME, I still cried like a baby when Dobby died.

So, without further ado, here is my good day.

7.30am

I normally wake up between 6.30 and 7.30am. 

As a general rule, the later I wake, the better the day will be, because it normally means I've slept more than 8 hours. 

I still wake up tired every day no matter how long I’ve slept, but if having ME is like waking up with weights strapped to your limbs and torso (which it is), then the more sleep you have, the fewer weights you have to lug about all day. The weights never go away completely but it does make a difference.

Everything becomes a hundred times more difficult if I've slept less than 8 hours. Nine is infinitely preferable. Ten is basically the Holy Grail.

In the morning, I take a little time to come round properly. Rushing anything is bad because it usually gets too much adrenaline into my system, and that wears me out quicker.

Slow and steady wins the race. 

I usually use this time check my emails and indulge my social media addictions for about 10-15 minutes (for me it's pretty much the least tiring activity I can do), before going downstairs, letting the cat out, grabbing some cereal, and heading back to bed to eat and rest. 

This takes about half an hour, so I usually rest for an hour at this point. Laying down, eyes closed, no talking, clearing my mind and focusing on my breathing. 

If I wake up earlier, I do a bit more web surfing after my first rest, and then rest again. Scintillating, I know.

9am

Once that rest is completed, provided I’ve negotiated a slot with my parents, I head for a wash. The negotiations are often a lot more complicated than they sound given that my stepdad takes longer in the shower that any other human I've ever met.

It's entirely possible he's actually a merman in disguise.

From here the days fall into two categories: shower days and hair days.

I’m not able to wash my hair and shower in the same day, it’s way too tiring, so on one day I’ll shower, and the other I’ll have a wash in the sink and mum washes my hair after. 

Raising my arms above my head for any length of time is a no-no so I have to have a hand with my hair.

I know not showering everyday probably sound gross to a lot of people, but when you have limited energy you have to make sacrifices. I’m actually pretty lucky that I can do this much; there are plenty of people who rely on wet wipes.

Showers are still pretty exhausting so I have a bench to sit on during bathing. 

I also use a towelling robe/dressing down instead of a regular towel, so I don’t have to use as much energy drying myself off.

It’s not easy for me to admit, but before the Occupational Therapist recommended that tip, my mum used to have dry my arms, legs and back for me while I sat on the toilet lid, because I didn’t have enough energy after a shower to do it myself. 

Even with the robe I still have to call her in to dry the lower parts of my legs for me.

Not being able to wash and dry myself completely on my own is pretty much the most humiliating thing that’s ever happened to me. I’m 28, and it makes me feel like a decrepit 90 year old. I still can’t quite believe I’m telling you about it, but if I don’t, how on earth are you ever going to know what it’s like? It's ME awareness week, after all.

Also, doing so stands a chance of helping other people in similar situations (use a towel robe, people!) so I feel like I’m just going to have to taken one for the team on this one.

If I have enough juice left while I wait to dry off, I brush my teeth (I’ll do it later in the day if not).

Electric toothbrushes are an absolute godsend because they do the vast majority of the work for you. If you have a chronic illness and you don’t have an electric toothbrush, I would rectify that asap.

To be fair, even if you don’t they’re a pretty good move from a hygiene/teeth-not-falling-out standpoint.

On a hair wash day, I wash in the sink and call my mum in after to wash my hair. At the moment I sit balanced on the edge of the bath supported by my arms and mum leans over me.

This is pretty lame for both of us, so we’re trying to set up a kitchen sink hose attachment so neither of our backs hurt so much. 

UK plumbing being what it is, we’re having trouble finding a hose that’ll go over the mixer tap at the moment.

Another tip I’d recommend is using a natural salt deodorant (although stinky paranoia means I use a normal one if I’m expecting visitors). It works just as well (despite said paranoia), and doesn’t stick to skin or clothes so much, so it makes it a lot easier when you have to wash next time.

It does take a while to dry, but that just means you can lounge around like a swooning Victorian lady, which greatly appeals to my sense of drama.

The wash process takes about 15 minutes, so I then rest for about 30. Laying down, eyes closed, no talking, clearing my mind, and focusing on my breathing.

During this rest I’ll normally listen to my first relaxation track of the day, and I put my SAD lamp on while I do it to try and get some Vitamin Ds.

SAD lamps don’t actually have UV light in them, but they do pep you up quite a bit when it’s grey, so they’re really, really useful when you live in the UK.

This is also around the time Mum will bring me what I call my ‘Vitashake', which is a faux milkshake designed to hide an extremely nasty powder-based supplement I take. More on that joy another time.

9.45am

It’s clothes time! It only takes five minutes, but you can usually get a fairly good assessment on how I’m feeling based on what clothes I choose.

There’s the good day skinny jeans/skirt and t-shirt combo, the not-quite-so-good t-shirt and leggings combo, the feeling-a-bit-pants t-shirt and pyjama bottoms combo and then full pyjamas. 

Every girl reading this knows that there’s also a graded system of underwear that goes:

1. Nice bra
2. Comfy bra (my usual standard)
3. Stretchy yoga bra/top thingy
4. No bra (only when I’m not well enough to get out of bed)

You can also tell how bad I’m feeling by the number of grey items I’m wearing. 

I have no idea why, but I tend to gravitate towards grey when I feel bad. Presumably, it’s because I feel like this colour best describes my emotional state.

I then lie down and rest for 10 minutes, eyes closed etc. (Sometimes if I have enough juice (or if it’s really cold) I’ll get dressed straight after washing and then I’ll rest for 40 minutes till ten.)

If it's a hair wash day I'll dry my hair at this point and then rest for longer.

Fortunately my wavy/curly hair only requires sitting and hanging my head upside down while I shove a diffuser at it for five minutes, so I can usually do that myself.

10am

Second breakfast time! One part of my ME is that it’s turned my slight hypoglycaemic tendencies into a full case of the hungry faints, so I eat six small meals a day to keep my energy at a stable level.

This is one part of the day that I enjoy because it makes me feel like a Hobbit (minus the hairy feet).

I try to make my meals last at least half an hour where possible (it’s recommended to help nausea and to aid digestion) so I’ll often go back on my phone while I’m eating to try and eek it out a bit, even though you’re not really meant to. 

This is actually a sign of improvement for me, because for a long time I couldn’t eat and do another thing at the same time.

If I manage the full half hour, guess what?? I rest for another hour!

This rest time is normally when my stalwart companion, Jessicat Fletcher, will come and jump on my stomach to demand cuddles. Technically I should count those as an activity, but I often don’t because, a. they only last about 3 minutes, and b. cat-cuddles are really relaxing.

11.30am

I go downstairs at this point, armed with my phone, iPod full of relaxation tracks, and my notebook for writing down my activities and rest periods.

I get myself a glass of water, lie down, on the sofa, cover myself with a duvet, and… oh! ten minutes have passed, so it’s time for another rest before lunch.

12pm

Lunch time, and yes, I do really have to eat again this soon. For some reason it takes a long time in the morning for me to build up energy, so I have to eat every two hours. I have a tiny bit more leeway in the afternoon.

I have to sit on the sofa with a tray, because my muscles aren’t strong enough to support me on a straight back chair for long enough; it’s far too tiring. 

Eating is one of the only times I sit up for an extended period, so as I improve I’ll have to strengthen my neck muscles before I can travel anywhere in a car or wheelchair.

I can cut up my meat on my own again though! Woooooo!!

Lunch is nice though because my parents come sit with me so we have a chat while we’re eating. Talking while eating is not something I could've manage before (having my parents in the room while eating is not something I could’ve managed either), so hooray!

Again, I’ll try to make it last thirty minutes. 

After that… an hour’s rest. Laying down, eyes closed, no talking, clearing my mind and focusing on my breathing. You know the drill.

1.30pm

Afternoon is my favourite time of the day, because it's when I have the most flexibility.

We eat tea at five, so, within the next three and a half hours, I get an hour and ten minutes to do whatever of my manageable activities I want.

Obviously that's split into chunks because I still get tired if I try and do too much at once; two 30 minutes and a 10 (with two 60 minutes and a 20 minute rest), or shorter activity periods if I'm having a worse day.

I tend to do some more relaxation tracks during my afternoon rests, as by this point I'm pretty "clear your mind and focus on your breathing"d out.

If I have appointments, they'll take place during this time, or I might do some online shopping, blog writing, reading or, my newfound hobby, cross stitch.

I've been able to read actual books and even some magazines recently; a massive improvement, as before I could only manage reading on my phone (much lighter and no repetitive page turning).

Magazines are a big deal because of the sheer amount of different kinds of information they contain. I have to read them bit by bit but it's still an achievement!

TV is still a bit much at the moment (with all the noise and movement it's a lot of stimulus to take in), but hopefully that'll improve in time.

Radio is a complete no-no. For some reason I find it waaaaay more tiring than TV. Maybe because there aren't any visual cues?

To be fair one of my main symptoms is noise sensitivity and I also having trouble assimilating auditory stimuli, so that's probably the main thing. A pair of earplugs is never too far away.

I also go out into the garden in the afternoon if I can.

We have a hammock, so it's not a massive change to do my activities and rests in the sunshine as long as I don't overdo it or get too hot, as temperature changes have a negative effect on my energy level. Layers of clothing, duvets and shade are key to handling this.

I'll have a snack at the mid point of the afternoon as well, to keep my blood sugar levels steady.

5pm

Tea time, and back to the sofa with a tray. Again, my parents will usually come sit with me and we'll chat while we eat.

Half an hour later... Rest time. Again. For an hour.

6.30pm

The last ten minutes of the day downstairs. I'll usually spend this chatting more to my parents or texting friends.

20 minutes rest.

(Sometimes I skip this step and go straight to bed if I’m extra tired.)

7pm

I head up to get ready for bed at seven.

It takes about 15 minutes, and then... I rest again. For thirty minutes.

7.45pm

Mum comes up with a small bowl of cereal to stave off any blood sugar drops during the night.

If you find yourself waking up in the night that's often why it happens.

Me and mum have a last gossip and she toddles off at about 8pm while I rinse my teeth one last time.

And then... this is the only time during the day I don't measure rests!

I know! You were expecting more, but I'm a bit more lenient with myself at this point because I'm about to sleep.

I give myself a whole half hour (gasp!) to read and indulge my social media addictions some more, as I'm normally reading on my phone at this point.

There are plenty of people who’d say it’s a bad idea to use my phone to read in bed and that I should have a book instead, but given that I actually find that more difficult, I’m happy to bend the rules on that one.

8.30pm

Phone off and lights out time. 

This is when I actually start my proper wind down process towards sleep. Insomnia has been a real problem for me in the past so it’s taken my a while to find a process that works for me.

I start by doing a round of ’tapping’, or EFT, which is a process of tapping on different meridian points of your body and talking about your worries about sleep. It looks and sounds completely mental, but actually works really well.

Then I lie down and let my mind wander and daydream, to try and get myself into a better, calmer state, followed by relaxing my limbs bit by bit when I feel myself calming.

I finally listen to a final relaxation track designed to help me go to sleep, and then its earplugs in, and (hopefully) off to dreamland.

This process takes around two hours, but can take longer if I’ve overdone it or not rested enough in the day. 

Believe it or not, two hours is actually a pretty short amount of time for me to be able to go to sleep; I’ve always found going to sleep tricky and that’s only worsened since I got sick.

I have sleeping tablets to use as a last resort.

And then, after however many hours sleep I can get, it's time to rinse and repeat and do it all again.

And so concludes my good day! I hope it gives you a better insight into my life (and the lives of others like me).

The days don't always run as smoothly as I've written of course; life is not that predictable, so there has to be a certain level of flexibility. 

If I don’t manage to get all the rest after washing completed before second breakfast is ready, for example, I’ll have to add what I’ve missed on the end of my next rest. It’s not ideal, but it’s necessary to not feel terrible, so I do it.

Some days I’m absolute pants at clearing my mind and I have to try daydreaming about calm things. Or I’m so frustrated with the whole thing I have to take a break from resting for a minute and go get a drink, or change where I’m resting.

Some days I lose track of how long I've been doing an activity, or how many rests I've had, or I just can't switch off no matter how I try.

But on those days I just have to be a bit kind to myself and realise that I'm not going to do everything perfectly all the time. 

It might mean I have to deal with a few bad days as a result, but that's part of the illness.

It's not how I thought I'd be living my life, but as long as I'm doing my best to stick to my regime and get better, then that's enough.

(By the way, I know I've not gone much into the bad days or dealing with symptoms, but that's because I'm not really ready to share that yet.

If you have questions though, feel free to ask me.)

And finally, on a slightly less gruelling note, my cousin Richard has raised £300 for the ME Association so far!!

I'm so grateful for him for running in the BUPA 10K on their behalf (and mine) and to all those that have donated.

The ME Association fights our corner so it means a lot that you've supported them.

If you haven't donated there's still time to do so here.

The Big Bad Tired

Hello!

My name is Hannah and I have ME/CFS.

The main idea of this blog is to give me an easy way to keep my friends and family informed about my road to recovery, and to help them understand my illness. 

This is primarily because whenever I have to talk to someone about my situation, I suddenly become Monty Python's black knight, cheerfully insisting I'm fine no matter how much I'm bleeding all over the forest floor.

That’s not necessarily a bad thing; I don’t want to be one of those people that whinges about their life every moment of the day, I don’t always want to burden my friends with what can be some pretty heavy stuff, and, slightly more selfishly, it’s really depressing talking about it ALL THE TIME.

The only problem is that is if I continue to act like I’m fine then people get pretty confused when I say I not up to seeing or talking to them. 

And if it’s a choice between my friends thinking the reason I don’t always see or talk to them is because I don’t want to (which is most definitely Not The Case) or being thought of as a moaner, then I’ll take moaner any day.

So, if you don’t know what ME/CFS is you can take a little look to your right where there is a (very) brief explanation. As you might've guessed from the title of the blog (you clever thing, you!) it means I'm exhausted. All. The. Time. 

Basically, somehow (and no one really knows how), my body seems to have forgotten how to store energy, so everything I do wears me out, and sleeping doesn't make me feel any better. 

It's a bit like being in a Duracell advert, but everyone else has the good batteries and I have the rubbish ones that someone got at a dodgy looking corner shop that smells a bit weird and stocks things like "Nezcafe" and "Androx".

It’s a condition that’s called a lot of things (ME or Myalgic Encephalomyelitis, CFS or Chronic Fatigue Syndrome), but, when I’m not calling it a string of expletives, I like to call it The Big Bad Tired. 

There are varying degrees of the condition, usually measured by a percentage. Some people are only marginally affected and can carry on pretty much as normal, with some minor adjustments to make sure they don’t overdo it (they’re the 90-100 percenters) and some people are completely bed bound (0-5%).

I currently level off at around 15%. 

I wasn't always, for the first year or so of my illness I went from zero to 40% fairly quickly, but unfortunately it's an unpredictable little sod, and now I'm back at 15%.

I’m housebound, and have been for a few months now, but I get up out of bed every day, and I can sit in the garden for short periods provided I wear as many layers as I can fit under my BMO onesie (I'm a classy bird).

My current rest ratio is 2:1, so any activity I do (and I rarely do more than half an hour at any one time) is followed by twice the amount of rest. And by resting I mean lying down, with my eyes shut, in silence, while I meditate or focus on my breathing (but not sleeping, as that would mess around with my sleep patterns). It's fair to say that that is about as much fun as it sounds.

Activity counts as anything that takes any effort, be it physical, mental or emotional. Whatever you can do consistently without making your symptoms worse is called your baseline.

I can normally manage about three small non-strenuous tasks in a day (not counting getting up and dressed, having my hair washed for me, brushing my teeth etc). This is normally things like ordering something I need from Amazon (more on how I'm certain my postman is judging me another time), writing emails, reading, writing blog posts etc. Any more than that and (somehow) my mind gets overstimulated and I can't sleep, and, as you can imagine, sleep is pretty important.

I can manage about half an hour in the company of one person (who is not one of my parents) and then I get tired. It's roughly the same with video calling (although video calling is slightly easier). 

I'm still trying to work out how often I can do this. I tried twice a week but I could feel the warning signals start, the harbingers of doom that promise retribution if I don't stop what I'm doing immediately, so once I stabilise again I'll try once a week.

Essentially my life is like a very boring version of Groundhog Day. Which probably sounds really depressing to you, but I'm kind of used to it by now.

It still sucks, don't get me wrong, particularly as there's not a cure. You can improve and manage the symptoms given time, and sometimes it just leaves of its own accord (please, please, please!), but there are no guarantees.

But it's my life now, and as much as I miss that person I was (so, so much), there's no point wishing it had never happened. I just have to grit my teeth and try and work my way back up to 16%, 17%, 18%...

And hey, if all else fails, I could always try Bill Murray's way: kidnap Andie MacDowell and get a groundhog to fall in love with me... Wait...