Living With ME: a video

In which I make a video for the first time and talk a little bit about how it feels, with really bad visual and audio (sorry). Also sorry about the lack of subtitles, it seemed really complicated to add them and I’m so tired. There is a transcript below though.




00:00  Hello, it’s A Writing Spoonie here. At the moment a Talking Spoonie. The 12th of May is ME Awareness Day, and I’ve never made a video before, but I’ve decided to now for a couple of reasons.

00:21  I wanted to do something a bit special for ME Awareness Day, because awareness is still really important for ME. There are so many people who’ve barely heard of it, or who still think it’s something millenials complain about when they’re feeling a bit tired or lazy. So there’s that.

00:48  And the other reason I decided to make a video is because I don’t see or talk to people very often and here I’m sort of doing that. And you can see me. And you can maybe see bit of how I actually am right now. Today.  It’s easy when I’m writing to come across as very articulate and to an extent that’s true for me. I think I’m a moderately decent writer, but even so. My last blog post took about ten weeks to write. So it took ten weeks to get those thoughts down in writing and to actually say roughly what I wanted to say.

01:46  I am reading off a script here. I’m not reading exactly the words I’ve written. I’m sort of paraphrasing and saying things differently, but this isn’t just me talking off the top of my head. I can’t do that, not for something like this that I have to do for a while and it’s all complicated and there are loads of things I want to say that… That’s not going to happen. So even now you’re not seeing completely the way brain fog affects me because I’m not trying to remember to say everything I want to say. I’ve got it written down. I’m reading it out.

02:33  So that’s why I’m making a video. I thought a lot about what I would actually want to talk about in a video. What would be better in a video than it would be in writing? And in the end I decided just to talk about me, today. ME, for me, today. It’s the 9th of May, a Thursday, and this is how I am today. It’s the evening, which is why the light is quite low in here. And also why I’m kind of tired.

03:22  And when I was thinking about this over the last couple of weeks I kept on being like, well to give them some kind of idea I’ll say this is a good day or a bad day, or whatever. But all the days… all the days are bad days. It’s a bad day. It’s been a few weeks now. I’m starting to think that maybe this is just normal now. Which is not a fun thought because it’s crap. But I don’t know. Maybe it’ll get better, perhaps it won’t. So far I’ve had ME for three years and it’s just got worse. Worse, worse, worse.

04:19  So this is definitely in my normal at the moment. I’m very tired today. Everything’s just so much. I slept well. I’ve actually been sleeping well – shhh, don’t tell my body! – but I’ve been sleeping well for the last couple of months, which has been really really nice. Sleeping badly makes me feel a lot worse, though sleeping well doesn’t exactly make me feel better, if that makes sense. I don’t know.

05:07  So today, at the moment. I am actually feeling quite nasty and icky. I last showered a week and a half ago, Sunday before last. Which was really nice. Having a shower, it’s the best. You feel so clean afterwards, it’s just delightul. But I’m still feeling the repercussions. As you can see, my hair – I don’t know if you can see, actually [turns hair towards camera] – is not washed. I last washed it Saturday, which is five days ago. So by now it’s feeling really unpleasant.

06:06  I’m wearing a nightie, which I’ve been wearing since Monday so that’s fun too. I basically live in these shapeless, cotton, not particularly attractive nighties at the moment. You know, the kind you get from, like, M&S. And it’s partly because getting dressed takes so much energy, so much, and also because most clothes are just really uncomfortable. So if I do get dressed I usually wear a loose dress. All cotton, it’s about the only fabric I can stand. And you can see I’ve cut out here where the seam was lumpy, ‘cause it’s agh.

07:01  Oh and no bra of course. No, I do wear a bra when I can, especially now I’ve found a brand that actually works for me. They’re all cotton and wireless ones and they’re big enough and they’re vaguely comfortable. No, they’re quite comfortable. So that’s really good. But sometimes, I mean, putting one on, taking it off again. Obviously I don’t have to take the nightie off to do that, but sometimes it’s too much. Like today.

07:41  I’m tempted to take a pause. Because talking, it’s nearly eight minutes now. Usually when I have a conversation I’m not doing all the talking. My voice is starting to run out. My energy – I’m going to try to do this all in one go. [takes drink of water] That’s better. Ok. Excuse me.

08:28  All right, where was I? Yes, bras. Fun. I am also of course wearing my beautiful noise-cancelling headphones. They are my best best friends. I was… about six months ago I was getting a bit better with sounds, I was coping better. But now… now it’s just hideous. I wear them all the time except when I’m sleeping. Sometimes in the morning when people are running their cars I have to put them on or it just wakes me up. And that sensory stuff is always the worst when I’m most tired so it’s not surprising that it’s bad at the moment but it’s tedious.

09:29  I’m sitting of course in my beautiful comfy chair, which you can’t see much of, but it’s amazing. It was really expensive. Luckily at that point I still had some savings. It was totally worth it. I mean, I’m still in a lot of pain often, although having said that, my pain is a lot less than some people have it. The pain isn’t the thing that makes my life feel unbearable. It’s just, it’s there, making my life harder, it’s horrible. But it’s not the thing. But the chair helps a lot with it. It’s supportive. It’s the right shape for me. The place that sells them, they have them in different sizes for different sized people, which is really helpful because particularly the big size would have been ridiculous. If they’d just had the one size – which, the man size, obviously, because most stuff is still designed for men – I wouldn’t have this chair. I might have a different one. But this one’s kind of perfect. It reclines as well, which also helps. It has a footstool so I can relax a little bit.

11:17  My bed is just past where you can see on here, so it’s not far to go. Just sort of topple sideways [laughs] if I need to. I have a lot of things within reach, as much as I can really. I have my pills just at my side. I have my water, you can see there. The switch for my lamp just here. Also the switch for the electric heater, I don’t have to get up to switch it on, I just flick the switch. And just next door is where most of my food lives. My carers make lunch, a hot lunch, because that tends to give me a bit more energy. But cold things to eat in the evening because we have dinner quite early.

12:28  It’s weird, I still find it hard to believe that it… this is my life now. It’s… I’m so dependent. Where I keep something makes such a difference to my quality of life. That just making a little video – we’re at thirteen minutes now – it’s so exhausting. I tried the other day and I had to give up. I haven’t done as much today.

13:18  Well. So I woke up with a headache. I had one yesterday as well, but today the painkillers actually got rid of it so that was nice. And I was so tired when I woke up. Which probably sounds obvious, but normally actually the first like hour of the day is about the best I have. Which is weird because I’ve never been a morning person, but there you go. I feel like maybe it just takes my body a while to actually remember that it’s ill, and then it’s like, oh shit. Or maybe it’s just excited because it’s had some sleep. I would understand that. And normally that first hour, that’s when I sneak in a cheeky little hair wash. But the last few weeks I’ve just been feeling awful in the mornings, hence the revolting hair, still unwashed after five days. There’s that.

14:32  There’s the weakness. That’s also getting worse which is actually really scary. Standing up is getting harder. The worst one is pushing myself up with my arms. It sounds silly but it just makes everything that much harder. It just means more pain, more fatigue. It means that even resting is a bigger deal. ‘Cause with these [indicating headphones] on, when I’m resting I can only lie on my back or my front, ‘cause they’re too huge. So mostly I rest on my back. And that’s not too bad to get up from because I can roll over and swing my legs off the bed and kind of lever up that way. But when I’m lying on my front… you just… I mean, there’s no other way. You just have to push yourself up with your arms. Or if there is I haven’t thought of it. And don’t suggest a mattress raiser because that was horrible. But I do have to rest on my front often and sleep that way as well because I can’t stay in one position for very long, it starts to get really very uncomfortable very quickly.

16:05  So there’s… I try to keep doing it because I don’t want my muscles to get too weak, but I find myself avoiding it anyway. It’s a difficult balance and, well, I just have to try. It just makes getting up a big deal. So that’s a fun thing.

16:37  Then there’s my throat, that’s also a tremendous joy. And that’s got worse as well. It’s a common symptom of ME, a random sore throat. That’s been getting worse since I’ve been tireder, which again always happens. And I’m always tireder at the moment. That comes in waves. It’ll hurt for a few minutes, then it’ll be fine. It’s fine at the moment. Then it’ll hurt again. I don’t know what causes it, there’s just nothing that seems to trigger it, it just randomly happens. But when it hurts it’s so painful, sometimes I’m almost crying because it hurts so much. And nothing helps it. Hot drinks, cold drinks, throat sweets, food. I don’t know, nothing seems to touch it. Not like with an ordinary sore throat where you have a Lemsip or something, it soothes it a bit even just while you’re drinking it. It makes zero difference.

17:55  And it’s those little things… It seems weird, feels weird, sitting here and just listing all the things that are sort of contributing and coming together. And like the sore throat thing, on its own it’s just annoying. And these little things like, like the pain in my armpit lymph nodes which is sometimes there and sometimes not, but all of it just builds up to make this overwhelming huge monster thing.

18:33  The big one, obviously, the main thing, I suppose, is the fatigue. For me anyway. You know, I’ve talked about how standing up or getting up from lying down just feels like a huge task, and I do find myself trying to avoid it. Which, I think I need to be conscious of and try not to, because I don’t want my muscles to completely waste away. I used to be so strong. Really super strong. Weird. Not any more. Now I’m weak. Now carrying half a litre of water through the hallway feels like a huge undertaking. I used to gallop up and down a spiral staircase with huge boxes of books.

19:44  So I’ve recently had carers starting. They make me lunch and they do my laundry. They clean the rooms that I use. And that’s inevitably affecting how I feel. It’s having a huge impact. It’s kind of hard to pinpoint why, but there’s a lot more… a lot more mental exertion, talking. However easy you try and make it you have to do some talking. All of it, I don’t know. I hope I get used to it soon. It’s been six weeks now I think.

20:38  We’re getting a stairlift fitted. That’s happening next week. So that’s exciting. I’ll be able to go downstairs. Sometimes anyway. I have to try and not get too overexcited and just end up in bed for the next month. But of course we’ve had to cancel my care that day because there’s no way I can cope with both of those things happening on the same day. That’s not going to happen!

21:10  So yeah, I think that’s pretty much how I am today. I’m really tired. Everything hurts. Although not my toes at the moment. But my fingers, they’re hurting. My throat’s starting to hurt again now. Bastard. I’m unwashed. Can’t do most of the things that I like doing. Can still read, thank goodness, with my eyes and my ears. So yay for that. And it’s going to take me several days to recover from making this video, because it has been a lot. But I’m glad to have done it. I’m sorry about the quality. It’s got even darker, I think, since I started because it’s dark outside almost now. And hopefully I’ve given you a little bit of an idea of how it feels to live with ME. Either that or I’ve just rambled meaninglessly because honestly, I’m too tired to tell just now.

22:40  And for my final note, I will remind you that about 25% of people with ME have Severe ME. And I am one of the lucky 75%. And I will leave it on that fun note. Goodbye.


  1. That was great. I did get slightly distracted by trying to see which books were on your bookshelves 🙂 , but you put it really well. It’s not easy to speak on camera when you’re not used to it: it must have taken a lot of doing.

    Liked by 1 person

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