Well I think it's quite useful for me to think about ‘when did I first notice the fatigue’ because I think that's a really tricky one…

When I was a teenager I got glandular fever and I had a… I was very poorly for the whole summer, it was the whole summer holidays, and I couldn't do a full week at school when I went back doing my A-levels for two terms. I think I remember them almost saying oh we'll keep you back a year and I was so mortified by the idea that I might have to stay another year at school that I did my damnedest to get through the A-levels, which I did. Intriguingly I got a really poor mark for my art, which I find quite amusing now. I always tell it as a story of how you can do really poorly in your A-levels and still end up doing something you're really good at and it's never the sort of defining end. And then I did uni and I was always getting… like sore throats. I was on antibiotics. I think it was that time before antibiotics were seen as less than… you know, they would seem more like sweets I think almost at that time. And I then got sick probably in the… it was the early 90s; 90… 1 or 92. I just didn't feel great and I couldn't put my finger on it and I didn't know quite what it was.

 

And I remember going to the hospital and they did that thing where they tested me for everything and nothing came back. And I remember going to see a consultant or a doctor here in the hospital, and he basically said,

 

"You've got chronic fatigue syndrome or ME, there's nothing we can do, you've just got to go away and rest." It sounds a little callous and I think he was sort of saying it quite, not kindly, but I mean he just had, there was nothing. And at the time it was called "Yuppie Flu" and it was very derided. 

 

I actually think it has been very derided until there's been this outbreak of long Covid. And I think at that point we started to see people talk about that, and chronic fatigue in a way that has just been a lot kinder, because I literally was sent away. I was in my early 20s, I was sent away and told, "We can't do anything for you." And that's quite crushing to say the least. And it was pre-internet so I didn't have any access to finding out anything about it other than going in the phone book and I found this ME society or this ME… I can't even remember what it was, like a… and I rang up and I spoke to this woman on the phone and I said, "I've been diagnosed with chronic fatigue syndrome." I even find it complex that the illness has two names. Do you know what I mean? but I said, "I've had chronic fatigue syndrome." And she said, "Oh yes, I've had it for 12 years” and I remember still standing in my kitchen and this feeling of just awful, heavy, horror that at 23 - I think I was, 24 - I was talking to somebody who the first thing she told me was she'd had it for 12 years, and I got off the phone because I just like, "I can't talk to you because you've literally crushed me. You crushed me." And I think I fought it because I didn't want to deal with it and because I didn't know how to deal with it. 

 

I mean, I've had instances where, you know, I see doctors and they didn't even look up from the thing, and just wrote a prescription for Prozac without even looking at me, almost. And I knew that it wasn't depression because my dad suffered from depression. I grew up in a house with depression. So I understood that what I was feeling was not that. I knew it wasn't that, but I knew I was really poorly and I knew I was deeply exhausted. 

 

I had joint pain that was just, I just wanted to like ‘be’ with pillows around me. I lost the breath in my body to talk properly to people. I would just not want to talk on phones because I found that really hard. Feeling any way able to read or to concentrate. And yeah, it's the thing with it. And for anyone who knows chronic fatigue, is that fatigue is like nothing else. And it's only other people who have had it, I think, who really genuinely understand. And I think people did do that thing of going, "Oh yeah, I get tired." And you just go, "I don't know how that's helping me." Because I think it's that thing of people trying to empathize. But I just, even now, I know tiredness and I know ME tiredness, and they are really different and they feel really different. And when I get that feeling of the ME tiredness, it's a massive quick response and trigger to that, because it doesn't just go away with a good night's sleep - which is what a lot of tiredness does.

 

So I had this exhaustion. I remember walking. Trying to walk up the stairs. I was living in Bradford with a friend of mine who was brilliant. She was a trapeze artist. So she was as active as I was not active. And she was brilliant. I couldn't walk down the road. At that time, when I was ill, you got invalidity benefit and you go into the post office and you cashed in this thing and they paid for you to be poorly, essentially. And I remember I always used to walk up and down the road and it was not very far. And I always had to stop on the wall, both on the way down and the way up in order to get there. And it's a very extraordinary thing because when you're like that, you can never imagine being well. When you're in that space of exhaustion, you just don't remember being well. And then when you're well, you can't really imagine being the other side. It's very funny.

I like this one (question), “The hardest thing?” 

 

For me, at the time, it was a lack of information. It was really difficult to know what was going on. My route into finding a little bit about it had been this ME number that I'd rung up. But obviously this woman had trauma’d me so much by saying, I've had it for 12 years. But I found the difficulty was both people's perception of it and my perception. 

 

I think the big… one of the massive things is feeling a complete fraud and a fake because you don't look… I could… yeah, I was out. I walked down to the post office. Sometimes when I was well enough, I went and sat in the pub at the top of the road with my friend. She took me up there. I remember doing that once and somebody looking at me and said, “I thought you were supposed to be ill”. And I just remember going, “What does that mean?” And all that did was make me go, “I'm a fake, I'm a fraud. I've got this illness that's yuppie flu.” 

 

People just tell me that they get tired, and it was really confusing because I didn't know who to talk to about it. And I had some good friends. My family, my mum  and dad were not great. My mum just seemed to think that she'd raised me well and given me some good food and why was I poorly. And so I didn't have anywhere overly to lean on. 

 

My friend I lived with was brilliant. But I had to do a lot of, I think fighting a little bit with myself because I was trying to fix something and I didn't know how to fix it. I remember going, I've had two poor experiences with trying to access support. The other one I went to: there was an ME support group. This was some maybe two or three years down the line. And I remember going to it and they were sitting in a circle and the woman who was running it, facilitating it, she said, “Oh, well, the latest research is we've heard that if you drink a pint of milk a day, that's going to be really useful. That can really help.”

 

 I've hated milk since I was a baby. I literally was the person who hid my school milk, so I didn't have to drink it. So I've been told that the cure potentially to my ME was to drink a pint of milk. It was just like, no, no. And again, it crushed me. It absolutely crushed me because I was desperate for something. I was desperate for something that I could take control of because I think the thing when you have an illness, a chronic illness like that, is that you feel so powerless. You feel so at the whim of waking up one day and feeling okay-ish and waking up the next day and feeling awful and you not knowing which one you're going to have. And I think that's so challenging. And so when it was… 

 

So something that gave me a way of having some control was what I was really seeking. And I  think at first I fought it and I fought it and I had some experiences with people where I don't think they understood what was going on and were unkind and gave me a hard time because I couldn't quite do what I wanted to do. I tried to do things and I couldn't do them or I got tired or… I don't say ‘promised’ too much, but I believed that I could do things and then I couldn't. And I remember, it's funny, isn't it? Some people being quite cruel really, you know? And I think the condition is one where there's such a poor understanding of how that works in your body that's so much more than being a bit tired.

I mean, I think people were, you know, surprised with things like joint pain. I remember my joint pain being so bad that I would know when it was having a bad session because I really couldn't lift my arms up and I'd sit with my arms just in my lap and they wouldn't really work because they were just too painful. And so this thing where people would go, “I thought you were supposed to be ill” or giving me a hard time for trying to work or do stuff. And this other side of it, which is me going, “You're a fake, you know, ‘yuppie flu’,  you're making it up. It's all in the mind. It's a bit of depression.” All of those dialogues just go to a place where it's really challenging. 

 

And I don't really know. Well, I have got some ideas. I do know how I got kind of moved forward. But I remember feeling really robbed of my 20s. And I think I still do. And I think probably that's informed my 50s, 40s really. But I just… I felt really robbed. I mean, things like… and I couldn't drink. Alcohol made me feel really awful. And I think I just was intolerant. And yeah, I don't know whether I was actually that nice. I don't know. It's difficult to tell, isn't it? When you sort of think about it, but I think I just fought and fought and fought. 

 

And my friend, who was a friend of my… the trapeze artist I live with, her friend had had a fall and she'd gone to see a homeopath. And she said, I want to buy you a session at the homeopath. And I know a lot of people have very sort of different viewpoints on homeopathy, and they are very welcome to those. I have my viewpoint, which was: I went to see this guy. It was in Queensbury, which is at the top of Bradford. 

 

I remember sitting in his study, he was a white bearded guy and he had little antique eyewash glasses all around this room. And there was books and it was a little bit like probably an apoc... apoc… apocathery. I can't say that word. Or sort of like had this sense of being something a little bit ‘other’. And he was the first person outside the groups of friends that I had that listened to me and talked to me about how I felt. And it was, and I remember just, I used to go and sit there and it was the best thing I ever did. It really, it started to give me this sense of, ‘oh, I've got a bit of agency here’. I'm doing something and talking about that. And he'd give me some little tablets and, you know, he'd say, don't drink this or do that. And, you know, and I started to feel like I had this bit of control. And I think that shifted a little corner. And I shall always remember that room with the eyeglasses and his white beard. He was just, and he was so calm. And I think because he was an older guy and he was listening to me and he had this kind of, slightly, sort of, physician-y apocathery kind of vibe to him. He gave a gravitas to his presence by… and the listening to me that I think was just so important. 

 

And he was kind. 

 

And I think I felt that I'd had a lot of things that weren't very kind. And I got this man and he was really kind. I shall always be grateful to him. I don't know where he is and if he's ever around, but… and also to my friend who saw… I'm going to gift you that first appointment and you're going to sit with him. 

 

So I'll not hear a bad word about homeopathy. If it's a placebo or not, for me, it started to give me the space to, I think ‘accept’ that I was ill. I didn't really want to accept it. It's just very traumatic. When somebody says, I've had something for 12 years and you're 23, 24. And you go, “I don't want that.” And I don't want the Prozac. Thank you. Cause I'm not like my dad. And then you have people say, “I thought you're supposed to be ill.” And you go, “Oh, I am ill. Am I ill? Am I just making this up?” And I didn't really, yeah, I didn't really spend much time with doctors. I didn't feel like I trusted them. My family weren't brilliant in terms of my mom and dad. But I just had friends around me. I had people who took upon on employing me as a self-employed artist, as a photographer, knowing that I was unwell.

 

And that's something always to be grateful for. If those people that go, “yeah, even though you're not too great energy wise, we want you to work on this”, you know, and “what can we do?” And so there's people who did that for me. And that gave me a sense of purpose because I was sitting in a little, you know, terraced house in Manningham in Bradford, you know. Sometimes just sitting, looking out the window cause I couldn't do anything. And you know, my friend was off traveling around Europe, you know, being glamorous. And I was so darn jealous. Didn't want to do the trapeze, but I fancied the rest of it. But those people that just facilitated that. 

 

And I remember doing one thing. I did a job at one show and it was doing a slide projections and I couldn't program the slide projector. And a friend came and programmed it for me while I was lying on the floor, just saying, “yes, can we do that?” Oh yeah, God. 

 

And other jobs where I would, um, you know, at lunchtime, you know, when I was doing a bit of photography, I just have to -  and I'm sure you'll understand - I just had to lie on the floor. If you, when you're that tired, I went and slept under a table in a, in a in a furniture shop. I was like, I have to just not be standing up at this moment. I have so got to lie down. So I think I worked out who those people were that I could trust for me to be able to do that. Uh, cause you can't cover it up when you're that bad. And I think that gave me a good sense of starting to feel like I had some worth.

 

Um, it's very painful really. And I haven't really, uh, dealt with it all because it's confusing, you know, and to have something that you feel on one hands is just something that people so dismiss and then on the other is so debilitating and to not have any route through that, you know, and I… as I say, not having any access to the internet at the time when it was happening, particularly, I mean, obviously since then, but…

 

I was totally at sea. I was totally at sea, but you know, I don't regret it. I don't regret that. Um, I've got to a point in my life now where what I realized is I learned how to love and enjoy every day from an early age. And I think that was a big gift to feel.. wake up and go. ‘I feel well’ to wake up and it's sunny and to just take joy from that, to feel well enough just to go for a walk, or to go up the stairs. And I know those could sound a little bit twee and it's not meant like that. I just think when you're younger, you take things for granted and when you're younger and you can't take things for granted, that's a massive… that's a massive change. That's a massive difference in your head that you can't ever not carry through your life. You can never not have that as something that is informing you. And I think that that has always - and it's one of the reasons when I started when I, you know, and obviously I'm a lot weller. I am a lot weller, you know, and… and I started to run, and that was obviously not until my forties. So it was quite a long time before I could do that. In fact, when I was quite poorly, I did have a friend. Every now and then we go… he took me to the swimming pool and I'd just try a length in the pool because that felt really lovely, but that was it. I didn't, I was unable to do anything.

When I started just running a little bit, people have a lot of ideas. People who don't run, often sort of sometimes have ideas about people who run, and they might like to tell you “oh, it's bad for you.” And, you know, even now with this situation I've got with my knee and people say “oh, it's the running.” No, no, it's not. The running's actually kept me physically strong. It's, it's nothing to do with that. 

 

Running to me - I hope to get back to it - is a thing I dreamt of being able to do. Just feel free. And when I, crazily enough, I ran the London marathon. There's a thing, isn't there, when if you run a marathon, people say, how'd you know if they've run a marathon? Oh, don't worry. They'll tell you.

 

The thing for me was, I was running for that 24 year old, you know, who would never have dreamed that possible. She would never have known that that was a possibility. 

 

And I remember, I mean, I was, I ran it. It was after COVID. And I just remember this amazing feeling of being free and feeling the space and moving and thinking this is like the best thing I've ever, you know, physically how I… I had that as an idea once as a bucket dream. I don't know whether it was, I don't even know why. I don't even think I was running, particularly when I was a teenager, but I was like, oh, yeah, you know, and I never imagined it. And it was like I was so proud of myself. I didn't give a fuck about telling people about it because that was a phenomenal achievement in terms of just everything that I'd sort of… I’d dealt with over the time. I mean, and obviously with a crookie knee as well. 

 

So that's, I think that's doubly impressive, but I also did it because I thought it was really important that people who have chronic fatigue, ME also are seen as people that do do stuff and can get better and can have this moment where things align for them and it's okay. And I ran for my running club, but if I ever, ever can run again, I will always run for ME charities and the visibility of that. Because I think this idea that it's just about, “I'm a bit tired”, it's so damaging. It's so damaging and it's ignorant and it's harmful and it's unkind. And it's just meant that the people who have suffered from that for a long time, just end up with stories about them lying in bed. And I feel, you know, when COVID hit and long COVID, I was like, screaming at the telly going, “Those are the symptoms, those symptoms.” This is what's been going on for me, for other people I know, you know, for so long and we're not taking it seriously. Oh no, some men are having it now, so we'll take it a bit more seriously. I know that's very generalizing, but I did feel a real… on one level, frustration. And I'm a lover of, “thank fuck for that.” You know, let's start, you know, having a dialogue about this illness, which we can't even decide the name on, you know?

 

I was like, this is really bloody frustrating, you know? So I don't know, I'm rambling all over the place. I'm just sort of like, I'm just going back to these, (questions) I think the thing about: what you want people to know about living with it - I think is about…

 

 I feel like there's a real wealth in true acceptance of what's going on. 

 

And once you truly accept that and don't fight that, then there's a point where you can start to work from. And I know I fought for a long time. I know  I kept trying to work through it. I knew I thought, ‘if I just keep going, it'll be okay’. And it wasn't. And the other thing I always feel is, you know, - being open about it. I haven't actually… there's a swathe of people who know me from running club, or in my sort of 40s and 50s who had no idea of my history of ME. And it was only when I got a, I had, you know, I've had relapses and I had a relapse, maybe a couple of years ago, two, three years ago. And it came on like that, like the switch. And I remember going to a meeting and I sat in this meeting, it was at UPCO. And I was like, man, I've got a lie on the floor. And when you know you've got a lie on the floor, ya know something's going on. And I was really, really unwell for sort of six months. And I'd say really unwell, I was functioning, but I then had to tell people what was going on. Because of course, there's people, a lot of the people I was around and at work had never understood that. And I don't know why I hid it. 

 

I don't know whether I did hide it or whether I just decided it had gone. But I know now it's never gone. And it's part of that story that I have. And even when I went to speak with a hospital about the knee surgery, and she said, is there anything else you'd like to tell us? And I said, yeah, I think I'd like to tell you that I have a history of ME or chronic fatigue syndrome, whichever you want to call it. And while I'm well, I just think it's important that you know that that's in my story. And she went, oh, thank you. And I just thought, yeah, that is my part of my story. And part of, I think, why I always feel like grasping life by the scruff of its neck and living it. Because I know what it's like not to do that.

 

I think. Yeah, I think it feels because most of my 20s and into my 30s, I was quite poorly. You know, that's a long time. And in your 20s, you're supposed to be having fun. I couldn't drink. I couldn't stay up. I mean, obviously, also having poor sleep, which is really bloody frustrating when you're really knackered, you know. but I felt like I got, I do feel like I got robbed of that. And I feel that that's not me being dramatic. It's just how it feels, you know. 

 

And so there's an element of this sort of… wanting to be a bit spur of the moment and wanting to be a bit carefree, wanting to do all of those things. “Yeah, let's do that”, “Oh, come on”, “Go on. Let's do”, you know what I mean? That energy that I feel was probably something that would have been in my 20s had I had the ability to do that. But I couldn't. I always had to know if I could lie down somewhere or if I could go somewhere quiet or just ‘be’. Yeah; rest. I never needed to overly be in darkened spaces. I was always okay, but I always knew I had to lie down. 

 

And I am really good at a power nap. That is a skill, you know. And I know that I can just, you know, I'm very good still. I just can power down. I just go and feel it and I go, right, lie down, power off. But I feel very… it sits very much in my core. It's very much, it is a very big, I think, you know, like a stick of rock you cut through, you'd see something, you know what I mean? It's that thing, it can't not be, I think. And it was really interesting when I found the other people who had ME and you talked to them and it was just like a relief. Oh my God. Because you just like talking the same language. You're just saying the same thing that I understand. 

 

And, you know, I'm sure that's true for lots of people with other illnesses and other conditions that feel very isolating. But I think, you know, I think there was a... and I'd be interested to know what that feels like for those who had that condition happen when there was access to the internet. I think that was a big thing for me was this isolation that I think will probably be a bit less now. Although often in that situation there's so much information. But, you know, me going and finding out if I drank a pint of milk, I'd be all right. And I'm going in my head, “I bloody hate milk. I don't ever want to see milk anywhere near me. If that's how I'm going to be cured, I'm in trouble.”

 

And that yuppie flu thing was so damaging. It was such a damaging… because ‘A’, yuppies were much derided. They were just seen as people who were, you know, rich and sort of a pain in the arse and, you know, estate agents, or whatever they were in the late 80s. But ‘B’, there was this idea that in some way it was your fault. And that's been another thing that I think is really key for people, I would always say, to know it isn't that person's fault. You know, no more than, you know, lots of illnesses are not people's fault. 

 

But I don't know what it is about chronic fatigue. You know, people would say, “oh, well, you do do too much.” You do too much. It's like I've bought it on myself. And it's funny, because people say these things in such a flippant way. And you just think, do you know what you're just telling me that you're you're telling me it's my fault. I've made myself ill. I've made, this is all all my fault. You know, I'm already in a position with an illness that nobody quite knows either how to name what it is, how to diagnose… And now you're telling me it's my fault as well. You know, I don't quite know what you want me to do with, you know. And I think, you know, obviously, certain demographics of people do get… seem to have… more chronic fatigue than others. 

 

But how…who… What other illnesses do we blame people for? You might if you had lung cancer and smoke 40 a day, people might be behind their back going “Well, you know, they did smoke 40 a day.” I mean, hopefully they wouldn't. But… but I don't think there's illnesses where we blame people, we say it's their fault for it. And I think they do. I think that happens with ME. And yeah, I think that has happened. I think maybe less so. Again, I think COVID helped. Because suddenly more people were getting ill. And so suddenly we have to do something about it. You know, we can't just toss a prescription of full Prozac across the desk. Like that and go, “Have that.” 

 

I did have a bit of counseling during the time. I got offered a bit of counseling and it wasn't brilliant, actually, because she, I mean, she started digging up in the family stuff, which is obviously what counseling does. But I think I was… just everything was so unstable in my life, you know, in terms of health and work and everything. Her digging up the family at the time, I didn't quite realize how useless my parents had been around this. But I crashed the car on the way back from the counseling. And I just thought, you know, not badly, but I just thought, I can't do this because… I can't. I can't unravel any more than I'm already unraveled. And so I stopped. And I've never really gone back to that. Apart from obviously, I still do and go to see the homeopath. And she has been brilliant. Because I've got this new homeopath, she's got another room that's really beautiful with green plants and stuff like that. But…

 

She's been really good at helping me through the dips I've had with my energy and understanding what I need to do to look after myself. And so I guess in a way that is my counseling.

 

You know, that's me taking control and spending time with somebody who knows me well enough that I can just go, “This is going on, and that's going on”. And they can help me and support me. So I do, do that. And I think that that's really useful. 

 

And I think for anybody, you have to find your own path, don't you? Your own journey through it. 

 

And for one person, it might be, you know, doing some sort of gentle yoga practice. For another, it might be seeing the homeopath, for another, it may be, you know, other things, but I don't think there's a cure-all. I think you have to just find your path. And it starts with going, “Okay, I've got I've got this illness. Now I've got to accept it.” And I can still see where I was sat in the pub. And it's really funny because somebody would have done that as a joke. They would have  said it quite flippantly. Oh, “I thought you're supposed to be ill” like that. Not realising that that was such a devastating thing to say to me, makes me remember to be mindful myself, actually. Because what's funny to you is not funny to somebody else. You never know where those people are at.

 

And I think the thing with the ME that happens is; that they don't know that you might have spent two days in bed to get to the point where you felt able to go and sit there for an hour. And then you'll go home. And you'll know that you've got to stay in the house for two days after in order just to do that thing. And why shouldn't you? Why shouldn't you go and do that thing? You know, and it's that thing that I think there's the issue with it is all of that stuff around it. And you'll know absolutely, if I'm going to do this, I've got to rest before that because I can't do it otherwise. And everyone will see, you know, you or me and they'll go look at them doing all this stuff and all that. And you go but you don't know what's going on. I mean, we don't know what's going on in people's back lives. 

 

But I think we have to be mindful of making value judgments like that, which, you know, can be quite flippant and very harmful to what's going on for people. It's the opposite. It's about kindness. And I don't think I felt… I had kindness from a few good friends. I had kindness from the people who took a punt on getting me to take pictures for them, even though I was poorly. But I think there was not a lot of kindness, generally about the illness. I think it was yeah. You were I think it's that thing, isn't it? You can't diagnose it. You only diagnose it by the fact that you haven't got anything else. It's like, okay, so you've not got cancer or, you know, or this or these, or all of this, you know. And that's a really unpleasant. That's a frightening process as well. You know, actually, just as you know, when then they start talking about all these things, they're doing all that and going, “We haven't got this, this and this.”, “My God, is that what you were looking for?” You know,

 

I was… I was at a loss with it all. You know, I was really at a loss. I got hospitalized a couple of times with it as well. And I just gave up a bit. I think I just didn't want to… I just… I  wouldn't… They couldn't get me out of bed. And I didn't want to move. And I think I just gave up. Not in a, you know, very dark way, but just in a way where I just went, “I can't do this anymore.” I'm just tired. I don't want to get out of bed. I don't want to feed myself. And it sounds really…

 

I find that unbelievable of me now. But I don't find it unbelievable of me then. I think I just got literally worn down by the illness being such a thing that was problematic for everyone around me. It seemed, you know, yeah. Worn down by trying to prove that you're ill. I mean, how many times? I mean, obviously, you've got a plaster on your leg, you don't have to prove you're unwell, do you? I don't think that's true of a lot of mental health illness, isn't it, as well, you know?

(Ellie): if a doctor can't prove it, why do we expect people to prove it? 

 

Yeah. I mean, I think he felt quite helpless, you know, he's sending somebody away going, “I can't do anything for you.” 

 

Yeah, I mean, if you think about it now, I mean, they sent me away from the hospital with nothing. There was no follow up. There was no… nothing about any counseling, or any other support. It was… there was nothing. I just went back home. And I think I was… I don't know what… I was numb, you know, what, what do you do when somebody just says that to you? I can't really remember. And I think partly some of that has been blocked by me, you know. You certainly don't ring up the ME local support group.

 

I'm sure again, it's that thing, isn't it, of us not sometimes realising what we say and how it can have such massive ramifications for the person who is listening to it. I'm sure that woman didn't mean me any harm. I am absolutely sure that what she wanted to do was to create some kind of connection and empathy with me. You know, understanding. Oh, yes, you know, it just didn't work out that way in my mind when I heard it. I don't hold her any ill. 

 

You know, it's probably somebody trying to help out others and just got it a bit wrong. And I happened to phone up on that day.

 

(looking at the questions)  Silver linings?

 

 “Seize the day”. 

 

I know it's a really trite saying, but I think it's a brilliant one. You know, but not to the harm of yourself, you know, don't go out and do something crazy. But I learned to garden when I started feeling a bit better and I really made… I started planting seeds and pots in the little back garden in Manningham and sitting out in the sun and watching them grow. The plants grow and sitting with the sun on my face. And those are still things that I really value. And I think that came from that thing of going, “I just need to make my space feel lovely.” And that's the photograph I've got to show you actually.

 

What I did is I made my world in my room. This crazy, bejeweled…bedecked with fairy lights and saris and fabrics and crazy stuff.

 

And I made this room and it was all with drapes and everything like that. It was crazy and maximalist to the maximalist of possibilities. And I had lots of fairy lights in there. Two of my favourite places when I lived in Bradford when I was really poorly were Bombay stores, and the Christmas shop at the garden centre on Canal Road. And I can't remember…

And I used to go when I, because I could drive, you know, and I used to go and just wander around all the tacky Christmas shit. All the glittery things because it made me feel… it was joyful. And at the time when I was really poorly Bombay stores was like that. Now it's much more about clothing. But there were so many beautiful things and it smelt beautiful and all the fabrics and all the saris and all the, you know,

 

Oh man, I just loved it in there. And I would go regularly and I would always find a little something that needed to get pinned up on my wall. But then it became this whole idea… So all of these, these are all Christmas decorations. It's a crazy little photograph. So it became this world of, kind of, crazy stuff. And then I started dressing with really loud clothes. I'm obviously much more refined now. I love colour but lots of maximalist pattern, you know, like so, these crazy leggings and these like crazy shorts and then this like, velvet top with like, mirrored patterns and stuff on it. I absolutely… and I got into decorating everything. And it was just this really very visual way of trying to give some kind of sparkle into my presence via my clothing. And somebody said to me, and you can see it, you can see the clothing in this picture. And I had quite long hair at that point and I'd put like bungees in it and it would all…

 

yeah, I mean, I wonder if it cut my hair because I just got so tired trying to wash it?

 

I found it really like; I'd wash my hair and that was it. That was that for the day. I was like, time to go. Was that actually..there's an element of clown here. There's an element of this outward presence and presenting… of very sad… and sort of broken soul really. And I think that that clothing particularly at the time was really a very visual kind of outward manifestation of that. 

 

The more ill I was, the more crazy I was looking. And yeah, somebody said, I think somebody said to me, “Oh, you look like a clown.” but I don't think they meant it.

 

She didn't mean it in a way of “you look a fool”. I think it was meant in the sense “you're hiding stuff here, but you're presenting one thing, but actually underneath there's something much darker and unhappy going on.” And I almost think that when I became well, there was a sign there; my clothing shifted. I think it was really interesting. I think this photograph was very curated, all my room, and I was always very, I was very proud of it. 

 

Not that many people saw it, let's be honest, because it's very difficult having a relationship when you feel that shit. I mean, that's the other, that's a whole other side to your 20s and having an illness like that. You're not really feeling great about your body. You're certainly not feeling great about somebody else seeing your body. And that feels, that's difficult to work your way through. But this space was like how I could control it. And I used to switch, it was probably a health and safety nightmare or a fire hazard. Luckily not, because I used to, I've got a massive love of fairy lights. I used to press two or three buttons and the entire room, I wouldn't put any other lights on. They would be like, whoa. So there's going to have to be some kind of fairy lightage going on and leopard print. And I still got quite a penchant for leopard print. As you can see, fun fur. I used to love fake fur fabrics, really nasty, quite cheap shit really. I think also, I didn't have a lot of money, but I just find that picture, the one that I held when I was running as well. That was the person I was running the marathon for. I didn't run with fairy lights, maybe I should… no. 

 

But to me, it was… and obviously as a photographer, I'm fascinated by images and also what is going on behind these things. And that's a very key image in my life. Yeah. And I think it is when your world shrinks, which it does, when your world shrinks and for some, it's just the bedroom because they can't do something. It's just your house or just the road or the street you live on, or you can maybe get to the park at the end of the road, or you can just get to Bombay stores and buy more stuff. That space is so incredibly important. And it's the only thing that I had any control over. So making that space really interesting. And the room after this, and it's interesting here because of colour, is that I wore quite a bit of orange and I decorated my room orange and I have a really slightly uncomfortable relationship with colour orange now. Because of that, I love it as a colour, but it's also a bit of ‘a colour of illness’ for me. Which I try to… and yellow was a bit like that, but I adore yellow. I've found a way through that. But those colours, I remember my room next and I've got some other pictures, and it was yellow walls and orange cupboards. It's very… and there's nothing subtle going on in the decor, and very curated.

 

Obviously I had loads of knickknacks. I was then too tired to dust them, so it all got a little bit dusty and a bit tatty. But it was very important. And I still have those, these figures, these little tiger, wooden tigers, that sit over my desk. I've carried them with me.

 

Yeah, I've still got this. I've still got quite a lot of the bits. This paper hanging here, I don't have any more. It became so faded and dusty. It was just repulsive and I was very sad to let it go. But now my colourway, for me, the colours I like the most are greens and blues. I've gone the opposite, slightly the opposite way. But part of that is because I will be outside as much as possible in my life, in my happy places being outside, not in there. I've still got a nice bedroom, but I much prefer being out in the garden.

 

I mean, the role of people who understand it, incredibly important. You know, for all those people that I've spoken about where things weren't great, there were all those people that did understand the importance of how to care and to not ask and demand. And to understand that when you said, I'm really exhausted, I just need to lie down. They went, “Yeah, okay, just go lie down, what do you need?” That's a great thing, isn't it? When somebody says to you, “What do you need?”

 

Oh, man. Yeah.

 

The only thing…it was about control; was food.

 

And I went into this, have you heard of this thing called food combining, where you have protein and you have carbohydrate and you shouldn't mix the two? Oh, my goodness me. So I did this thing. And I don't know how I came across it, but there was this idea that… I became vegan as well, because that was a control thing. Okay, I can't control other things, I control what I can eat. And I became vegan. And that was really tricky in the 90s. It was sosmix. There was no hummus. I don't know how I did it. It was really tricky. And that's why I gave it up. 

 

Eventually, I remember being in Bradford. And I don't know if this happens for you, but my… sometimes it… the frustration is you get very, very hungry, really, like, “I've got to eat, I've got to eat.” I did. And I was in town. And I can't remember what chain of sandwich shop it was. But I went in and, you know, and they're like basically taking the ham out of the ham salad to give you a sandwich because there's, you know…you're lucky if there's a vegetarian one, let alone one that's vegan. 

 

And I just thought, “I can't. I can't do this. I've got to… I've got to eat.” And so my sort of veganism, I did it for a period of time. And I do like tofu and stir fries and stuff like that. And it felt like I was doing myself some good and thought, this is how it's going to work. I'm going to cure myself with a tofu stir fry. Of course, there's only so many of them you can eat before you go. I just want a sandwich and a cake. No, I don't want any more sosmix. 

 

And so I did that. I tried that as  a route. And I had this thing pinned on the wall in the kitchen, which was about what foods were neutral, what foods were carbohydrate and what foods were proteins. And I remember that tomato turned into a protein when you cooked it according to this thing. And that then sent me into a disarray with pasta and sauce. And I'm like, oh my God, it's funny, isn't it? You just like spend… you obsess on these small things because you think, oh, this is the root. This is the thing that's going to sort it out. If I don't eat tomatoes with pasta, I've got it sorted. It's not milk! And so, you know, I did do quite a lot of stuff like that. And yeah, but I got I… when people say to me, ‘how long you been vegan?’ And I am vegan again now because it's like it's a lot easier. But I said I did do it in the 90s, and everyone looks at me and goes, “oh, I bet that was hard.” And we're like, “Yeah, yeah, it was.” You know, when I was, like, in town and I needed to eat desperately and I was just like, this is stupid.

 

You've got to eat because otherwise you can't get home. You know, and, you know, that thing of being stuck somewhere and you're so tired and you go, I can't get home. I don't know how to get home.

 

Um, it's a horrible feeling. Again. Yeah. You know, um, and asking for help at that point was something I always found very hard. Because I was just too bloody stubborn.

 

You know, I just had a lot of messaging of stuff that just made me think, “I'll do this. I can sort this out. I'll stop eating tomatoes and pasta” and, you know, and whatever it is that I can do. And then, you know, put me fairy lights on when I come in the house and, you know, wear, you know, loud trousers and I'll be fine. I still, I still, I'm not… I don't object to loud trousers now, you know, I have got them still; but I've toned down somewhat. I don't think I've got, I think I feel…

 

I think the only thing I would always say to people with other people is, um… people who've just started on that journey, because it is, um… It's just like, is that seizing… that seizing the moment, isn't it? And being kind. And don't fight it. I'd wished I'd stopped fighting a lot earlier than I…

 

I fought too long. 

 

And, uh, I think that was something I should have stopped doing.

 

But that's how it is, isn't it? When you're a fighter. I think sometimes it's just really useful to just hear, you know?

 

Oh, when you lie down, you’ve got to lie down.

I know you know that.

I KNOW you know that.

 And it's like nothing. It's not just, “oh, I'm a bit tired” is it? 

 

But, I feel really strongly connected to people who have it. And I think partly because I think there's a cruelty to it. That's hard for us actually. Um, and I, and I, and I think…

 

It needs a better name because just saying it's about chronic fatigue is… I think ‘Iconic Fatigue’ is great, by the way. I just think there's that thing of, “Oh, I get tired” and 

so people just think of it as that. 

 

Actually the, the wealth of other symptoms, the brain fog, the inability to, you know… the shallow… I can always feel it because my lung capacity shrinks and I…

You know, and I know I've got a good lungs on me now.  But I used to sing and that was the other thing; I sang before I got sick and I've never sung since. And I think that's something I need to do. because I loved it. I did love it, but it just took all the breath in my body and just walking upstairs and there was no way I was going to sing. I sang in this great women only sort of choir. 

 

Do you know Anni Raw? Anni Raw. Yes, of course you know Anni Raw. So she ran this beautiful choir in Bradford, you know, like women we could just drop in and out. I loved it. I used to go and sing. I used to go with Julia Calver and people, you know, the whole Bradford scene and stuff. I loved it. And then, yeah, then, and then the chronic fatigue just took that away.

 

And I don't know why it is, that I've never found my way to go back to that. I don't know whether it's just because I think I'll be a bit of a shit singer. I don't think I was brilliant, but I loved it. I'm really self-conscious of singing now. You know, when you go somewhere and they go, "Oh, join in. Let's all join in and sing." And I'm like…

 

Something's still stuck in me that won't let me do that. And I think that's something that would be really interesting for me to kind of unplug, but I still haven't been able to do that.

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