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

It's not EU, it's me (us)

Hello my lovely loves,

I know that there has been a lot of talk about the EU and Brexit and you've probably heard enough about it last a lifetime, but this blog is partially to allow me to process and talk about my life, and I have been following the referendum with great interest and worry.

(And unfortunately, this is going to be something that effects us for a long time, so you might as well get used to the term Brexit because, as cringeworthy as it is, it’s not going anywhere.)

I'm pretty heartbroken about us leaving the EU. I've never enjoyed change, although I am pretty good at dealing with it regardless, but i think, for me, this type of change has been more difficult than it might otherwise have been. 

Had this referendum been about moving forward in unity and peace, of finding new ways to improve the world, then I might feel differently. But this doesn't feel like a step forwards, only a step back. 

We've chosen to close ourselves off from the world to try and protect ourselves from unifying changes, and choose a nostalgic world view over a wider picture.

Generally, I'm a big fan of nostalgia, I love 50s fashion and antique items of furniture, but I am careful to fully understand the political situations of those periods. I never say I was born in the wrong era, for example, because while I love dressing like I live in the 50s, I would never want to live a society where there was so much social inequality; for women, people of colour, LGBT people and immigrants.

Nostalgia is only good as long as you recognise a period's faults as well as its positives, otherwise it's just stagnation.

I am also very worried for all my friends who have joined us here in the UK, to live and work, and what this result might mean for them. I don't want them to leave, or feel that they're not wanted, not only because they are some of the most amazing people I know, and that they make this country better, but because no one deserves to be shunned for who they are or where they come from.

Although I believe most people who voted for Brexit are not racist or xenophobic, those that are have taken this collective decision as validation for their own foul beliefs, and there have been many reports of aggression and hatred, to and from people of all ages, to immigrants, and people of colour regardless of their nationality and that's horrifying.

This behaviour is completely unacceptable and it breaks my heart to see that a group of people are considering the UK's decision on Brexit as outright encouragement. They believe that 52% of the country agrees with them in every way, and that should anger the Leavers as much as the Remainers.

(I would briefly mention here that all such acts are classed as hate crimes and should be reported as such.)
Being half Bulgarian, and having a Bulgarian surname, doesn't help either. I might have been born here and lived here all my life, but I doubt that would matter too much to the people responsible for these attacks. Especially as I'm on benefits.

Another fairly large part of my worry (and my remain vote) was that I knew that a lot of the laws that protect disabled and sick people like me would be rewritten by the government. 

We currently have EU guidelines for conduct of disabled people, and our own laws have grown and changed alongside the EU's, as you might expect.

Even with these guidelines and protections in place, the UK government has not always abided by them as well as they should have, and has often left those in need to struggle.

Now we've come out of the EU, our entire legal system will be in upheaval as the government decides on huge swaths of laws, likely without going through parliament (there's just too many to do this).

I can't help but think that this is incredibly undemocratic and could lead to some difficult times for certain groups of people in the future, if they're not properly regulated and the changes aren't made transparent to the public.

If not, I will be completely unsurprised if it leaves the most vulnerable, more vulnerable than they already are.

We know now, of course, that any suggestions that were made as to sums of money that might be spent on the NHS, were just that; suggestions, and have now been debunked by both Farage and Iain Duncan-Smith. The other main draw of the Leave campaign was of course to cut down immigration, and that’s been debunked by Daniel Hannan.

Politicians are so very good at making it sound like somethings been promised when it's only been heavily implied (and unfortunately that makes all the difference when it comes to consequences for said politician).

(On a side note, I'm always surprised when anyone other than the rich vote for right wing governments, especially given the respect and dependence we have on the NHS in this country. Everyone always seems so surprised when history repeats itself and they give business and the rich an easy time and come down hard on the health service and the poor and vulnerable.

The whole ethos of the right wing is the priority of capitalism over socialist ideas, business over the welfare state (and, as an extension, the people reliant on it). As despicable as that might sound, that's what, at it's core, right wing politics is based on. That's why most conservatives MPs are from wealthy backgrounds, they've often never had to worry about what would happen if the NHS crumbled, because they can afford private healthcare. They know that the people most likely to do the biggest business and make the most money are those that are already wealthy, so they do everything they can to incentivise them.

Of course not all politicians, or all conservatives are bad, but... these are the facts. People may be in different places on the spectrum, but right wing politics put business first.

If you were wondering why I'm so sure that's what will happen in the event of further cuts and legislation, that's why; an extremely long list of examples through history. That and personal experience.)

There is of course, the domino effect of right wings groups around the world now calling for their own referendums. I've got mixed feelings about this one: I don't want our decision to shatter the EU (and potentially its continental peace) under any circumstances, but, as someone living in Britain, I also hope that we don't have to become too much of a cautionary tale in order to prevent that from happening.

I don't think the EU is perfect, by any means, but it sprung from a noble idea, to keep Europe from war, and I'm sad, embarrassed, and a little ashamed that we've elected to leave that behind.

Provided the EU is able to weather the storm, I actually think Brexit is a good thing for for the rest of the member states. Britain has always kept itself at arms length from the EU and that must be incredibly frustrating, especially when you're trying to get stuff done.

I just hope the decision to leave, and the continued general arseholery from Farage, doesn’t leave the EU with such a sour taste in it’s mouth that it refuses to work with us in the future. There are so many of us that don't want to leave, and I hope they'll remember us in their talks.

As much as I’d like a second referendum (one where people actually vote for what they want to happen rather than using their democratic power for “protest votes” and then being shocked when the thing they voted for happens), I do think it’s very unlikely.

Even if people regret their actions, everyone was given access to the same information, and the same opportunity to vote for their chosen decision, despite the lies that were peddled and the warnings that were given. 

Unless the petition for a second referendum gains more signatures than the 17 million people who voted to leave the EU, holding a second one would be changing the rules retroactively.

There is of course a possibility Brexit can be blocked by parliament; it is only advisory after all. I’m not sure whether it’ll happen, but we can only hope.

We know Nicola Sturgeon plans to fight tooth and nail against leaving the EU, and would rather break the union of the UK and go for Scottish Independence before Brexit happened, but we’ll just have to see what happens.

I wouldn’t blame Scotland, or Northern Ireland, for wanting out of the UK after the appalling display from the politicians in parliament following the referendum result. Maybe if I ask nicely they’ll take me with them.

If there's one thing this whole debacle has taught us, it's that a vote is not a toy or something to be taken lightly.

Whatever your situation, or your politics (and in light of the upcoming presidential election in the US, I'm particularly looking at you, Americans), you should never vote for an outcome (even in protest) that you would not be 100% happy to live with.

People have made that mistake here, assumed that their vote held no power, found that that wasn't true... and now we must all deal with those consequences. 

As I read online recently, votes do have power. That's why so many countries won't allow their people to have them.

H

p.s. here are a couple of pieces I created post-result, the first in anger, the second in appreciation. It gave me some nasty Payback, but I felt so emotional I just had to draw something. They’re also available as t-shirts, bags, mugs, and stickers on my redbubble page.

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.