When I first started having really bad fatigue, it was actually after a bunch of other symptoms had already started to really come to the front and really like… take over my life. So I was having difficulty with breathing, and I was having a lot of pain in my body, and a lot of headaches, and I was having really bad chest pain, and this was in 2020. So I thought it's - at the time I assumed it was - Covid related, but wasn't quite sure and I couldn't get a doctor's appointment because of Covid to see… sort of what was wrong with me. 

 

They said there's certain tests they could do to see if I'd developed asthma - and they really thought I'd developed asthma at the time because I was having these chest pains and shortness of breath - but they couldn't do any of the tests because they weren't allowed to do them, because of Covid regulations. So they just gave me an inhaler and said “you're probably asthmatic”. So I went from having no issues with fatigue at all and being… I mean I was never like “super healthy”, like “sporty” but I had no issues with my health, and had no issues with fatigue levels. I could always like, work for a full day and beyond and then go do social activities, and over 2020 and into 2021 I started realising that every little thing I was doing was like… really affecting my energy levels, and it kind of came on slowly. I'd say it wasn't like all of a sudden, I had noticed that like just walking up the stairs would leave me really breathless and my doctor said “oh you're deconditioned because everyone's been in the lockdown” and “you obviously haven't been going out and doing as much so your body's deconditioned so that's that just you just need to exercise more”. So I tried exercising more and that made me feel worse. And then they referred me to the long Covid clinic because they said there's two points where I thought I'd had Covid; In March right at the start I had like this terrible cough that lasted about four months and then in about September/October, I think it was like when the first lockdown restrictions had lifted and I'd been into work into the office a few times I had just what felt like a really bad flu and I wanted to get a Covid test so they said we - it was before like postal tests and before you could buy them - so I walked about five mile to go to a testing centre in the rain while I had really bad flu and the test came back negative and after that I never really felt well again.

They said oh you probably did have Covid - the doctor - and it was probably a false negative because I had… they did like an antibody test or something. So they knew at some point I had had Covid, so they referred me to the long Covid clinic -  and back then in 2021 I was like the first group of people that went to this long Covid clinic - and they hadn't really associated long Covid with chronic fatigue at the time, or ME or any other energy related conditions. So they… The whole process was about getting you back to full health. So they'd put me on an exercise bike and make me like do step tests where I stepped up and down, and tried to slowly reintroduce exercise into my routine to make my body fit and healthy again, and they knew that… they assumed that it was like some kind of body attacking itself; like your immune system attacking itself, so they had a lot of support in like terms of breathing exercises and rest, but then they always coupled that with like gradual increasing exercise. Which now - because I'm still with the long Covid clinic after five years - now they absolutely don't do any of that, and have actually recently merged with the ME clinic so they offer the same kind of advice and support for long Covid that they do for ME.

 

I’d do the like… gradual exercise, and slowly increasing things, and then I'd spend like two or three days in bed where I literally couldn't move my arms; and at first physical fatigue was really like my major symptom but over time like… cognitive fatigue really took over as something that really affects me. So I have these energy crashes and I can go from being like I am now where I can talk and have a conversation and understand things, and then a few hours later with an energy crash I can't finish sentences or I can't find the next word, or sometimes it feels like the words won't even come out…

…and to counteract that I just spend a lot of my time in bed. Like A LOT of my time in bed. I work from bed most of the time on my like… on my laptop. I rest in bed, and I sleep in bed, and I just sort of hang out in bed, and do all my like… “fun things” like listening to podcasts, or listening to music. So I tend to get out of bed, go downstairs for an hour or two and then go back to bed, and just repeat that cycle throughout the day.

 

Planning to do other things it's… it's almost - it's not like planning to do something. It's… it's planning for the crash after - is really what I'm planning. Like how much time am I going to have to take off work after, if I do anything? How much time am I going to have to not spend, in the rest of my house, spend with my partner? So it's really just planning like how long is the crash going to last and then what can I do to mitigate that as much as possible. 

 

Um… there are some unexpected silver linings with having really bad fatigue. All the time… um… I used to work like 50- 60 hours a week, and then do loads of social things. So I'd never be at home, and now I'm always at home, and that might sound awful but actually I've really learnt to love being at home, and just spending way more time with my wife, and my cats, and my four walls… um… there's… once I learnt to appreciate that… um… there's like… a bit of joy in that. Just not having to go do things, being able to work from home is such a privilege… um… and I do work from home like 99% of the time. So that's been really good… um… and also learning to live with less as well. So... having less money coming in and having… um…less planned activities really makes me appreciate when I can go do one or two things a month. um… In my previous jobs… um… not even that long ago. I think I finished working as a postman about 10 years ago, and that does sound like a long time ago but to say that I've had… like… chronic illness and chronic fatigue for over five years now, it wasn't actually that long ago that I was working two jobs. So I would get up at four in the morning and go do an eight hour shift as a postman, and walk about 20 miles… um… and I would run round as well  - even though you're not supposed to because it's not safe - but I would run round, because I'd try to shave 10-20 minutes off my eight hour shift by being faster. um… So I could go to my next job; which was running an arts venue, and quite often I would go from… straight from finishing in between 12 and one o'clock, to going and starting in the afternoon and working till midnight or beyond. and then I'd have four hours sleep maximum and do it again… and I also had insomnia. um… Which I was being treated for… um… by a sleep clinic. So I would… sometimes I'd not sleep for one or two days at a time, and now I could close my eyes here and I would be asleep in 10 minutes. Which is quite nice. It's… uh… it's a nice opposite. um… It's horrible in a lot of ways but… um… I also wouldn't recommend insomnia as an alternative.

 

There are some things that I still really enjoy doing… um… which I'm still able to do, even with such a life-changing condition. um… I really enjoy listening to podcasts, and I used to listen to podcasts while I was working. um… So I'd always put in about eight hours of podcasts a day, and now I'm still putting in about eight hours of podcasts a day. So I'm learning a lot about space, or video games, or music or true crime,  and it's quite nice to just have that as a constant background… uh… although because I do… because I do also suffer from like… cognitive fatigue, I have found that even simple things like listening to an audiobook… um… can also really affect my fatigue levels.)

 

Recently a doctor told me… uh… only watch repeats. um… So I could just sort of ignore what's happening on the tv and save my cognitive energy. To just let it flow over me; and I have to say I have not followed that advice, and because that just sounds really dull. Always watching the same things that you've watched before, or listening to the same podcasts that you've listened to years ago, that you already know who the murderer is in the true crime… uh… seems pretty dull. So although it probably does… um… affect my fatigue levels. I'm not just gonna like, stop living either. I'm not just gonna stop doing all the things that I want to do. um… I still find that things I really love. I'm doing like… playing video games. I can still do quite regularly, but I really have to adjust how I do it. So in the past I may have played a game online for 10 hours perhaps, maybe, and now that would be like 30 minutes… with a planned rest break. So I can still do those things… um… and I know that they're actually probably taking up more energy than you might think it's worth… um… but it's not like I'm able to go out and go for a long walk anymore, or go out and do social activities as much… um… and I still plan to do one to two things a month. So like every other week I will go and either; go to the cinema, or go around to a friend's house ,or go just to a shop. Just one shop. Just so I still feel like I'm not still in lockdown, when everyone else has moved on. Otherwise if I go two or three weeks without leaving the house I do feel like the entire world is moving and I'm not. Even though I know… Even going to the cinema, and watching a film in the cinema is going to mean I'm gonna walk maybe 10 steps, and I'm gonna have to… you know…  if I need the toilet I'm gonna walk a bit longer and think; okay all of this is gonna compound to an energy crash, either later in the day, the next day or two, or three days down down the road. Where I'll have just like a terrible energy crash and I'll start with headache, and dizziness, and feeling sick, and then I'll just end up spending the rest of the day in bed. But even more so than… even more in bed. In bed and asleep rather than just in bed and resting in bed. In bed and in a lot of pain, or in bed and needing to be sick. Yeah. It's really important to… Also -  for me - to go into work sometimes.

 

So even though they allow me… like they're fine with me working from home, and I'm really lucky that I work a job share; so the things that are needed someone to go in person, the other person that I job share with is really kind and does those… is really kind and does those things for me. So I can do more of the administrative work or... you know image editing and things like that, that can be done on a laptop at home. but just occasionally it's nice to just be in a noisy office surrounded by people. Where everyone's got their lunches that smell weird, and it's really noisy, and the fans really awful, and it's really making a horrible noise, and you got soaked with rain on the way there because it feels like... it's not just the same every day, and although I say I'd… you know that's something… I love to do. I've probably done it four times this year, and we're in October. So it's not like I've been able to do it loads, but just knowing that I can do it as well, and have an alternative is also really nice.

 

For me the worst symptom I have is kind of gross. It's vomiting

 

um… So if I do too much - which can be simply like walking up and down stairs - I will get so tired that I throw up just a little bit. Just a little bit of sick. Just a micro sick, and then after doing a like… a “little vom” as I call it um then I'll… like… I'll be seeing spots, and feeling dizzy, and a couple of times I've fallen. Like how an old person “has a fall”.

 

I've had a few falls, uh… broken my toe, banged my arm on the side of a bath, banged my head a few times, um… which is not great, and I raised it with my doctor and they just said “vomiting is not a symptom of chronic fatigue” or long covid so that must be something unrelated.” but - I was saying - but it's only happening when I have such severe fatigue that I barely feel like I can breathe… um… like I can't talk properly. I'm confused and I'm so tired I can barely stand, and then I'll throw up. And they just said it's not related. So I don't really know what to do with that, apart from try to not get to the point in my fatigue cycle where I'm going to be sick, because that just compounds things. 

 

Oh it's really tiring to be sick. it's really tiring… um yeah… and then um light sensitivity is also… kind of awful um… So quite often I'll have to just sit in like a completely dark room.

 

…and by far the worst symptom is the cognitive fatigue. When I can't finish a sentence because it just feels like I'm not myself. Like I… I feel like I have… it's the only time when I feel like “oh I have a chronic illness”. Everything else it's like “I'm a bit sick but like other people are more sick than me” um… and when I… when I get to the point where I'm mixing up words or… or can't even find a word, or sometimes can't stand up off the sofa, and can't talk; that's when I feel like… trapped, and I start to spiral and panic… um… and then that also compounds, and… and uses up my energy as well, but I found loads of strategies to like save energy… um… and as I've been with the long covid clinic for like… five years as well - although I said earlier that they kind of were not useful at all at the start - since then they've been really good, since their understanding of long covid and… and how it intersects with chronic fatigue… um… how their understanding has developed, like… their advice has become so much better. as well and their levels of support. So like… things like, they got the council to come and do a… like a “welfare check” I guess… um… and installed a stairlift. Which I was really resistant to, because I was like “I don't need a stairlift I can walk” and they were like “if you can save the energy that it takes to walk up and down stairs six to eight times a day you will have less energy crashes and you'll be able to work, and you'll be able to talk by the end of the day” and once I accepted and understood that um… it's been such a big help um… and other things like; I don't take public transport anymore - even though I can -  because I'm well enough to take the public transport, but I'm not well enough to do it and not have a terrible effect later on. So I just get taxis everywhere which kind of feels bad... environmentally… but also I wouldn't go anywhere if I didn't get a taxi somewhere.

 

it'll happen like it can. I can not be sick for maybe a month or two, and then I can feel the fatigue like… I'm pushing myself - even doing simple things - and I'm constantly feeling on the edge of burnout. Even though I always feel like that, I feel like much worse. Like I know that every night I'm crashing, and every afternoon I'm feeling sick, and then once I do ‘be sick’ then that's just a few days of… like… I can't get out of that cycle, because being sick uses up so much energy that even doing nothing. I'm not recovering, and then I don't want to eat properly, and I don't want to like… I struggle to exercise and it not have a detrimental effect, but I need to move, and I need to go outside and get fresh air, and I end up not doing those things because I've thrown up a lot, and then I'll just spend days and days doing that… usually, like… four or five day cycle, and then I will really try to reset myself by just doing nothing for a few days. Like literally do nothing, and have support from my wife, who'll just do everything for me; she'll… she'll cut up my food, she'll bring me my clothes, she'll put my socks on, she'll put me to bed, lift a glass of water to my face, and… so I'm basically doing nothing for a few days, and then then I'm back to normal again, and I can feel like I can do things, and I can walk around, and feel like myself again; but it rarely gets to that point where I actually can't lift a glass of water. 

 

I was thinking, like okay “This” is probably going to cause an energy crash, and also… you know… I arrived early because the clock's changed, I am a fool, and I thought… well this will probably cause an energy crash. So maybe I should say halfway through “let's stop and not push myself”, and my wife was like “don't push yourself today if we need to stop. Stop.” but also I don't want to do this twice and have two crashes. I'd rather have one bad crash sometimes, and it's really like… um… planning your life around your crashes, um… and I know that I'm gonna have a crash. It probably won't be too bad because I've just been sat down talking, and all I'd be doing at home is sitting down anyway. So it's… I'm absolutely fine and I don't feel bad at the moment. I… also another strategy I have is when I know I'm going to do something outside the house, I basically do nothing in the lead up to it. So I'm like… banking my energy to use up later. So I've got reserves. I feel like so I'm all, good you can sometimes tell because - for summary - this has only started over the last like… year - when my fatigue levels get high I get like red rash down my face um…so Ruth - my wife - always shouts “you're going red” like… and that's your face, like… you can physically see the fatigue on my face almost, um… which is… I don't know why that starts to happen. I don't know if it's a mix of all the medication I'm on - which is a lot - so if you see me going red maybe just give me a shout. 

 

There's certain sounds I associate with um having chronic fatigue; like “This is a reminder - Tablets” is like… something that happens a few times a day in this uh… in like different Alexa devices that are around my house um… to remind me to take different medication um…so if I hear that someone else's house… if I hear like an Alexa, it reminds me I'm like “oh! Tablets!” uh… even… even if it's not time for tablets.

 

When thinking about what roles other people play in my life… um…it makes me think two things: it makes me think um how different my relationships are now with my friends and family to how they were, like, five six years ago, and how everything feels at arm's length now. um… I wouldn't say that I was, like, super social before, but I'd always be out of a house, I'd always be working. My social life was really caught up with my work life. So I knew a lot of people. Hundreds of people, and I knew what was happening in their lives and now…I don't. um… Also it has meant that I talk to my neighbors more. People that I never said a word to, because I was awkward and now they’re the people that I see all the time because the main place I go is my back garden. So I tried to find ways… to find ways to, like, strike up conversations with neighbors. So I built a little library at the end of my garden and filled it with books that I don't read, because reading uses too much energy. um… So I took all my books and sort of put them in a tiny little shed box at the end of my garden, and I spoke to more people in the last three months than I have in the nine years that I've lived there, um… but thinking about what roles other people play in my life, it really makes me think about my relationship with my wife as well because… two things have changed. As I said I used to spend most of my time outside the house. So I would see her fleetingly, we would arrange times to see each other um… and now she's my carer. So she's also reduced her hours at work so she can be my carer and do everything for me. So I only don't see her for a few hours a week when she goes out to work…  um… and she's kind of like the entire world to me now - I mean she always was but in a totally different way - um… which has been a real change in how our relationship works, and I think for the better as well, because we're so much closer I think than we were when I used to be out of the house at all hours.Yeah… so… I have two cats. I get to hang out with my cats so much more. They're like - is this sad? I don't care - they're like my family. They're my best friends. Like there's one cat that either sleeps under my arm or next to my head every night. If I sit down she's on my knee. She's basically with me; she knows everything about me. She's the only… she… I spend more hours with her than anyone else in the world; and then I've got this other cat who is like two years old, who's a monster who just bites me all the time. um… and I love him so much.

 

He's just like an absolute monster… um… and he goes outside a lot. So he'll go out and come back with other cats as well, and bring them back to our house. So that's nice. So, I did have Buttons and Binks were brother and sister and I had them since they were kittens; and Binks died in 2023, but we still got Buttons and she's now 17 and she's still doing well… mostly. She… as long as she has…like… this liquid that you put on a meat that strengthens her bones, and a tablet that you give her on a morning for her heart, and things like that. She's still like a kitten as long as she has the medicine - which I don't do any of that anymore - so Ruth sort of does everything with the cats as well, and I just get the the lovely cat energy; and the other one is called Nibbler, and when they… it was already called Nibbler and I was like “oh like Futurama; like Nibbler from Futurama” not thinking “No. Nibbler because he bites”. So we're like, well keep the name we don't need to change his name… and no it's Nibbler because he wakes you up by biting your scalp.

 

What's the hardest thing about living with chronic fatigue, is how isolating it's been,

and how I can go weeks if not months without… if I didn't work a job where I have to sit in on teams meetings once or twice a week, I would actually talk to no one for months - apart from my wife. um… even when I do have the energy to go out and do something it's often like, I'm gonna go to a shop, and I won't even speak to anyone when I'm there. It's just so I have a different four walls around me and I have to go somewhere where I know I can sit. So I might go to the cinema once every other month and I don't speak to anyone. So it's… it's been really isolating, and kind of affecting my mental health in weird ways as well… but earlier you did one of the questions, was like what are the silver linings and actually… when I used to have really bad insomnia I had really bad anxiety…um… and now I don't have any anxiety at all I just feel really chill and “chill and sick”. I feel really relaxed and really poorly; um… but it's a it's a different kind of depression I guess… um… being alone a lot… and not knowing that I'm not able to do things; and when I started seeing the doctor they'd say things like “this is a temporary condition and you'll…”, “things will change and you'll get over it” and now they say things like “this is a complex and misunderstood illness and you need to understand this could be the rest of your life… but hope that it's not… but prepare that it is” and that sucks… and that sucks… a lot… um… and then I hear other people will say “I had chronic fatigue for years and things have changed and I'm so much better now so this will happen for you”... and I can't really hold on to that like. I don't want to wait for my life to be good again. I want to enjoy the life I have now because otherwise I'm just waiting to not be ill, and I don't want to. 

 

I want to enjoy the life I've got now; although it's so different. There's joy, there's nice things, there's always good stuff on the telly, there's always new podcasts, and new video games, everyone is a phone call away, and everyone is supportive, and I never reach out to anyone because I don't want to, because…. I mean the thing is people ask “how are you doing” and I don't want to tell them that I've just been sick, that my left arm doesn't work properly today, my face is all red… and I've put on a stone because I've gone nowhere. No one wants to hear that. Or… or if I don't tell them the truth of the matter then people will say things like… “get well soon” or like “call me when you're feeling better and we'll go out drinking”… like okay I'll call you in 2052.

 

Okay. So; you don't want to hang out with me because… I'm not well enough for you? until…l I'll call you when I'm not like this, and until then you're not interested. and that happens a lot like… and people are so well meaning and no one's saying “get well soon” because they're an asshole. They're saying “get well soon” because they want you to get well soon and they miss the person you was, and I miss the person I was…. but also this guy's okay. Hang out with this guy. Come play video games at my house with me for half an hour and then I'll go sleep… and I think this question about what would you like other people to know about living with fatigue or chronic illness… um…. that it's - for me anyway, and I know that chronic illness is different for every person - the way that I experience it is… I don't...

It's not that I'm ill right now.

it's that I am.

um… this is kind of the new me and maybe that will change and my health will differ in future. It might get worse, might get, quote unquote, “better” um… but this is who I am now. I am someone who lives with really limited energy levels, and a lot of terrible symptoms. um…. I don't know what my point was. apart from it sucks.

 

but um I guess… you know a lot of people think that this is like… “something I'm going through” and are surprised I haven't got better yet, and maybe I'm not looking after myself well enough uh to get better um… or I'll have a good week. So I'll go out and do something and they see me at the one time of the month that I am well enough to go for a pint and a conversation for two hours, and they think that I might have a bad day after that but… that's my normal; and I have some bad times. 

 

That's not my normal, that's like “the peak of my health” is like that time… 

 

and also I'm often like “pretending I'm wel”l um… to like, fit into the “well-cool kids club” I guess. Like pretending that I am not really confused when we're out at a bar because it's so noisy and I have no idea what people just said to me; or pretending that it's okay that we go and sit at the back of the cinema that's only an extra 10 steps, because that's not gonna kill me for a week. 

 

There's two things that, like, I dream a lot about; being in a situation and then not being able to do what everyone else is doing because of um… terrible fatigue. Like; we're at a party and then all of a sudden I can't find my walking stick and everyone's leaving, and I can't walk without it.  Or I know I won't have much energy, and all of those dreams have, like, you know, like “an old horror film look” to them. Like an old vampire film where, like, there's like the black hue around the edge of the screen and the, like, flickering bits of film. So I always think, like if I was watching my life it would look like a really miserable horror film. With like… old flickering film effects, and like those little cigarette burn effects. You know, all the film like crackling and things, and getting worse. So as the energy levels get worse, I feel like the… the… the like… black circle is like closing into, like, almost tunnel vision, um… which is weird and that's fine. 

 

The other thing that I want to talk about was how my… like my bedroom used to be like… I would go sleep and now it's like the place I live almost.

 

um… so I've got like… I also try to listen to the doctors when they say things like “don't take electrical devices…” like not like a kettle but like you know… like phones and tablets “...into bed; because the blue lights will wake you up and you won't be able to sleep” and I'm like “please put the blue light on me, so I can't sleep that would be lovely” not sleeping is not the issue. I don't need a blue light filter anymore. I need the opposite I need something to wake me up. um… so now my bedroom is like… I have kind of everything I need. So for a while I had like a little trolley with a kettle in the mini fridge so I didn't even need to leave the bedroom, and now I have a desk that swings over my bed. So it's like in the bed is like… split up into different compartments. I can roll over and sleep and roll back and be right into a team's call and you'll never know that I'm sat in bed because, I just propped myself up and angle the camera in a way but it looks like I'm sat in an office. um… and then there's the area where the cat lives at the bottom. There's like, a little square of this pet area, sleep area, office area, all within the like, confines of the bed.

Yeah. It's like a map. I really think of it like a “flat lay”. like you know like you do a flat lay of your desk, but that on like… a bigger “bed scale”. So I've got like, the desk, the um… the pillow, that's actually a stand for my tablet, um… it's not a pillow it's a… it's a tablet stand, and the um the little desk that's got like… where the coffee mug is and everything has its place including cat.