Gravitational Pull
So I first got ill… well, I didn't realise that I had got chronic fatigue because I had glandular fever.
When I was about 11 I had glandular fever and... I don't remember much about that time other than having to sleep downstairs on a lilo because I couldn't manage to get up to my attic room, and watching a lot of Mork & Mindy. That is my overriding memory of having glandular fever.
I had a lot of time off school and when I went back I remember an adult saying, “oooh glandular fever can be nasty, it can take you ages to get over that” and I remember thinking, “Yeah whatever Roger, I'm fine” and then it got to the summer holidays and I just kept on wanting to go to sleep. Like I kept on going, “I just don't feel great, I'm gonna go for a nap’’ and I think at first my mum was like, “Oh it's just her being a teenager.” Like maybe she's growing, maybe it's part of hormonal changes and then we sort of realised that it wasn't normal and I was sleeping a lot. And then it took ages to get diagnosed and there was a lot of stuff at school like they didn't believe chronic fatigue existed; they called it ‘yuppie flu’.
There wasn't really an understanding of what to do with me and also because I like theatre I think there was a sense that they were like, ‘’oh, she's acting, she's acting, she's being dramatic. She's doing this for attention” and whilst I would agree that I am quite an attention-seeking person, the illness was totally separate to that. Even though I had a diagnosis when I was, I don't know, maybe 13? When I had a big relapse in 2019, again it was really difficult to get a diagnosis, I kind of went to doctors and they were like, “is it because you're overweight?” And I was like, “no, no, it's not that” They're like, “Is it because of your periods?” And I was like, “no, it's not that.”
So yeah, I don't think it came on gradually and I've been living with it since I was 11 but I only really started talking about it in 2018 maybe, which is wild. It ruined all of my school experience so I hardly have any GCSEs and my school didn't enter me for GCSE maths because they didn't want me to ruin their league tables. So I walked into maths one day and they went, “Oh, you can go home, we haven't entered you for the exam”; and at the time I thought, “This is amazing, I never have to do maths again”… and now looking back on it I'm like “Wow, that was really negligent, you should have entered me and I would have failed.” but yeah. So it's interesting, I feel like it's only something that I've… I'm beginning to take ownership of or beginning to name in such a kind of overt way. Which is odd given that I've had more of my life now with Chronic Fatigue than without it.
The most prominent symptoms of Chronic Fatigue for me, and I know it's really different for everyone, is a kind of extreme tiredness, like a leadenness. I often kind of describe it as feeling like I'm wearing a weighted blanket, or I'm lying in bed and I feel like I have bricks on top of my chest, or it's like when you walk through water and the water's heavy, you know? So it feels like there's resistance, so being extremely tired in a way that is not the same as normal sleepiness. Yeah, I found it really difficult to describe actually, but yeah, maybe that feeling of moving through water or being sucked down, there's a kind of gravitational pull towards my bed that makes getting out of it extremely difficult.
And I also think there's a big misconception about Chronic Fatigue in that often people think that it's just tiredness, but it has this weird white noise of anxiety or nervous system dysregulation that runs through it. So it would be lovely if when I was tired I could just sleep, but it's quite a common occurrence for me to wake up at three o'clock in the morning and feel sharp, and feel alert, and feel well-ish, and then want to go to sleep just as my alarm goes to get up for work. Or to be wanting to rest and have a heart rate of 110, so I'm trying to rest, but I can't because my body seems to be in panic mode. So yeah, quite often in my head, I kind of see it like a dial with anxiety at one side and exhaustion at the other. And most people's bodies can kind of release energy in a consistent and metered way, but mine just flips back and forward between extreme anxiety and crash and there's never a kind of middle ground.
So the anxiety is kind of quite challenging, or the nervous system dysregulation; feeling calm in your head but knowing that you're having palpitations. So that's a really key symptom that I think quite often gets overlooked. Or suddenly not being able to regulate my body temperature. So in my head I feel calm, I might feel happy, but my heart's racing, I'm sweating, it's a cold day, I have no idea and very much annoying my friends by constantly mentioning the temperature of my feet and constantly updating them. “Guys, I've got really hot feet, really, really hot feet.” So that's another symptom. And then brain fog, which fluctuates so much from day to day and makes everything feel unreliable.
And I think that's the thing about Chronic Fatigue, it's consistently inconsistent. So one day I might be able to stand up in front of 300 people and give a conference paper and do that absolutely fine. And once, before I was really owning that I had Chronic Fatigue, I walked up a hill for work as part of a project and then later in the day I was trying to …..talk to people and I lost the ability to read.
Like I had something in front of me and I literally couldn't read it - and it wasn't difficult or complex. So you have this wild fluctuation where physical activity can mean that my brain stops working. So if I walk to the postbox and come back, I can't finish a sentence unless it's a good day, in which case I can have a conversation.
I can mentor students. I used to be able to teach. So it's not that I don't have the brain capacity.
My brain capacity is still there, but access to it is limited. Like sometimes it's just inaccessible to me and I can't, at those points, I can't really advocate for myself. And I think people are quite staggered when they see me in that state of brain fog.
I think it's quite surprising because I mask a lot as well. I try and pretend that I'm sort of okay when I'm really struggling. And I suppose that feeling of energy…I never can plan when I might have energy.
So I think of energy more like if you imagine a shoal of fish and they kind of swim by and they're there one minute and I'm like, ”Oh, I have energy. I feel good. My brain's sharp.”
I could fill out that really difficult form right now at 3am or I could write that email that I want to write, or I could do that thing. And then as quickly as the fish have arrived, they've changed direction and swum away. And I can barely remember my bank sort code or my name or how old I am.
A delivery driver asked me how old I was the other day and I couldn't remember and I got it wrong. So yeah, energy being something that happens to me or swims past, but isn't constant. Yeah, it's strange how much impact physical exertion has on my mental capacity.
And I'm not sure that that's something that people might necessarily know or vice versa. If I've just done something really difficult, like if I've just written, done a lot of writing or written a really complicated set of emails or got my head around a really complex spreadsheet, then the idea of walking up the stairs then feels exhausting. So they're not two separate pools of energy.
They're collected. And one thing can have a lot of knock on effects on something else. I think that's it! Everything feels very connected and you end up having to make quite difficult choices.
You're like, “I've got enough energy to either have a shower or to cook a meal.” And which one am I going to do with the energy I have available? Or you might start a task and have energy and then halfway through cooking, you're like, “oh no, nope, it's gone.”
I'm like a deflating lilo, like a lilo with a puncture.
I think the hardest thing about living with fatigue is the social isolation and the feeling of not being able to join in. And actually, one of the things is not being able to help people when I want to help them.
So I think about… I want to help with cleaning, but I can't even dress myself. Around the house, I want to pull my weight. I want to feel like I've got a contribution to make.
I want to feel like, you know, if a friend needs help with their garden, I want to be able to join in and help them. And I think particularly because I know that I rely on other people's help so much, like so many people help me. I want to be able to do that for other people.
And it's frustrating when you can't, and you can't show up for people. That's really the hardest thing.
And that time is different now.
So I really miss the idea of having a whole uninterrupted day of waking up in the morning and then staying awake the entire day and then going to sleep at bedtime. Because it just means that I can't go anywhere. Like I feel like I'm attached to a weight or an anchor or a bungee cord.
Like if I go on holiday, I might want to go out or go out on a day trip. I really miss day trips. The idea of being able to go somewhere for a day with my friends, and not have to think, oh, well, I can't. I probably can't go because at one o'clock, I'm going to have to find somewhere to lie down.
And then there's nowhere for me to lie down. Or it's really expensive. It comes with a kind of extra cost.
So day trips is… the lack of day trips and the lack of afternoons. Like afternoons are just lost territory. And I just, so many things I love are only open in the afternoons or close early.
Like vintage shops, why do vintage shops close at four? It just means I can't access them. And that is sad. Although it's probably good because my house is already full of stuff. So maybe that is a blessing in disguise.
And I think a hard thing is that I think it's difficult for other people to get their head around me and the illness because of that consistent inconsistency. So I might appear quite articulate or on top of things. But then all of a sudden, I'm not.
Or all of a sudden, I'm struggling. So I'm both. And I think maybe it's just that politics at the moment or… I feel like the political situation, there's a real sense of the government going after disabled people.
And I feel like they're asking me to categorise myself and I'm either; useless and should get in the bin, or I'm competent and I don't need any support and I'm a liar.
And I'm like, no. Can I be competent and need help? Can I be articulate and struggle? Can I be educated and ill? Can I have dignity and ask for help? Or do I have to pick a lane? Because I don't think either category they're asking me to pick from is accurate. And there's no place for me to be seen as whole.
I mean, a lot's come on since COVID in terms of medical practitioners. And there are a lot of GPs doing really amazing work.
But I think there's still a lot of GPs that don't believe that Chronic Fatigue exists or go, even if it does exist, I don't know how to treat it. It's not treatable. So please just leave my waiting room.
So yeah, the constant medical gaslighting and gaslighting from the government, I think is deeply unhelpful. And I think it also sets the tone for other people who might not understand. If people in the public eye and people from medicine are undermining it as an illness, then, you know, people's families might say terrible things. It's just, yeah, it kind of sets a tone, I think.
So I think that's been the hardest thing.
What do I miss about life before fatigue? It's difficult. Because I didn't have all that much life or all that much independence before I got chronic fatigue.
So it's hard to miss something that you haven't had. But I was a lot better when I was…
I feel like my symptoms improved once I got to university. It's probably like the most energy I've had.
And I was able to study and I was able to go out drinking and do all kinds of normal studenty things. I think I miss the absence of that white noise of illness that runs under everything. And of illness just being ever present.
And… yeah, it's tricky. And I think I used to be when I was little, I used to be super active. And so I used to climb everything. Like I used to when I was a baby, I used to escape out of the cat flap and try and climb things, climb trees, climb climbing frames.
I once crawled across the road to try and find my friend's house and knock on their door. And I had already crawled across the road when my mum found me and managed to take me home. So I think I used to be active and even like my student time, I used to go on walks and I used to have a playful interaction with my body.
And I don't think my relationship to my body is very playful anymore. I'm always worried about, oh, can I do that? And then the less you do something, the less able you feel to do it. Like I'm thinking I used to sort of jump on walls and walk along them just for no…not for any reason, just to be playful.
And that doesn't happen anymore.
Something that I see that other people do is, I think it's really about going to places, going swimming. I love wild swimming.
I like happily throw myself in any body of water at any temperature at any time of the year. So yeah, I remember throwing myself into the sea midnight at new year, being absolutely fine with it. But now I have to always consider the amount of energy it's going to take to get to the place.
Because if I can't get there or if I have to get the bus there, then I'll be so tired from the bus that I won't be able to swim. And as I don't drive, it makes me very reliant on taxis or people dropping me places or people including me. And so when people are like, oh yeah, we just went for a hike or we went wild swimming, we just got the bus, we got the train to Ilkley.
And I think, oh, I'd really love to do that. I'd really love to be immersed in the world or immersed in nature. I feel like my access to nature really reduces.
I'm really lucky I have a park near my house so I can get to there and that's fine. But getting into water is the big thing that I miss. I love water.
I love swimming, which is interesting when I think about the print. Because in that I'm thinking about water as something where I'm drowning, not waving, and something that's a weight and something that is difficult.
I think what I would like other people to know is that it's so inconsistent that if someone is one way one day and completely different another day, that's not them pretending or lying or…
that that is just the reality of what we're dealing with. That symptoms constantly change.
You might suddenly have symptoms that just pop up from nowhere, (Sarcastically) which is delightful, and then they'll disappear. Yeah, the consistent inconsistency of it.... and that we want... I mean I said we, that feels like I'm speaking for other people.
That I want to be out and part of things.
I don't want to be asleep all day, but sometimes it's necessary. And I think I would want people to know to please just keep inviting me to things. You know, even if I say no five times and even if you're like, well she's never gonna come, please just keep inviting me or keep dropping around to my house or keep having phone calls with me.
I know phone calls are really retro, but I have one friend and we just, we really speak on the phone a lot and it's so nice because even if I can't get out of the house I can have social time, so that's really nice. And just because I can do something one day, just because I managed to… I don't know, walk four flights of stairs one day, doesn't mean I can get out of bed the next. And that's as frustrating for me as it is for other people.
I'm just thinking of times when someone's invited me to something and I said, oh I can't because it's between two and three and that's normally when I have to sleep. And then that day, between two and three, I haven't been tired. I felt great, but by that point I've said I can't go.
So yeah, it's just constant Russian roulette really. And that is really frustrating for me and I completely understand that it's frustrating for other people too.
Have you learned anything or are there any unexpected silver linings? No, no. (laughs)
Oh, oh no, I have. Okay, I got it. So I was brought up never to ask for what I want, or to know what I need…or to…
I got brought up not to be demanding, but that's actually really unhelpful.
And some of my amazing friends, I watch the way that they're so in tune with what they want and need. And they're able to hold boundaries and they're able to say, oh yeah, I really want to join in with this, but I don't know whether I'm going to be able to commit to a definite yes or no. Or like, they're just really good at knowing what their body needs, what their mind needs, and what they're able to do.
And I think watching my friends be good at that is an essential skill for anyone with fatigue, because if I can't name what I need or what I can't do, then no one will know. So I think the silver lining is that I've just got so much better at naming things and naming them even when they're inconvenient and being able to say, “oh, I'd really love to do that, but I don't think I can.” Or “I can try, I'm going to try, but it might go horribly wrong. But let's just try.”
And so being more in tune with what you need, I think, is a great thing.
I enjoy… I really enjoy interior design.
I'm a massive interior design geek. I love fabric design, I love ceramic design, all areas of design. Like, I love, if I'm in the supermarket and I see someone with a really good outfit on, I am compelled to tell them.
Because I love detail, and I notice detail, and I can't tell. I think that's both a brilliant thing and a difficult thing, because it also means I notice all the details of my illness that get me down, and restrictions. But when it's at its best, it means that I enjoy little, tiny things.
And sometimes on a bad day, those little tiny things are great. So, for example, I inherited all these vintage spoons. Like, they're really beautiful Victorian spoons, and I polish them up.
And so I have, like, a spoon that I use for the sugar, the sugar bowl, and it's got beautiful kind of engraving on it. And sometimes I'm like, even if the rest of the day is terrible, this spoon is excellent. Someone really, like, did a great job of designing this spoon.
And they designed it maybe 150 years ago, and I'm still here appreciating it. And isn't that gorgeous and lovely? And then my design geekery also bleeds into another thing that I like doing, which is I love watching films. And increasingly, I've got really into horror films, which at first I couldn't ever watch because I was too anxious.
And I wouldn't sleep for days. Like, I was just terrified of everything. But now I realised. I watched a gateway horror film called Midsommar, and it turns out if the crockery and the production design and the textiles are really good, and there's, like, bright sunshine and hand embroidery, I can deal with any amount of gore, because the embroidery is just so good.
So now when I watch films, I'm always going, “oh, that's a brilliant lamp.” Or like “Oh, God, look at that doorknob. Isn't it amazing?” Or “oh, what have they done there? Who made that design choice?” So yeah, films.
Really love watching films. And it's great because I can watch films however sick I am, which is a joy. And it's a sociable thing.
And I have a group of friends that come around to my house and watch a film. We have a movie night once a week. And even if I'm sick, movie night can still happen.
So that is, that's lovely. Oh, I'm getting into drawing, which is really interesting, because as I've got sicker, drawing has become more important as a way of me owning the means of production, of being able to think something and make it real. And… my mum was an illustrator and a very, very good artist.
And so I stopped drawing because she was, she'd always go, “”Oh, okay, I see what you've done there. You could just improve it.” And it really put me off.
So for ages, I had loads of baggage about drawing, and now I'm getting back into it. And it's, it's something I can do at three o'clock in the morning, that is fun and meaningful. And so I'm getting back into that.
And again, trying to embrace the detail of that. So I think I enjoy things that engage my appreciation of detail.
I think the people around me have a really vital role to play.
So I'm really lucky in that my partner is dismantling patriarchy, kitchen clean by kitchen clean. He does all of the cleaning in our house. He does 95% of the tidying.
And I feel very guilty, but I also feel very appreciative of it. But it's very hard because my partner is very active. Their body is a temple, and mine is more of a bouncy castle.
And so it's difficult because I think experientially they don't really understand it, they don't understand what it is to not be able to move because that's so important to them.
And I'm lucky to be supported at work, so I work with an access support worker who's also a friend and collaborator and I'm surrounded by people at work that…that can support me and can hold space for me when I'm exhausted and hold space for me when I'm vulnerable. Because when I'm really tired I can't really regulate my feelings, so crying is something that happens at work. And I'm really lucky that I'm surrounded by collaborators that still can gift me dignity in that space and can give me dignity if I have to lie under a table at a conference or at a talk or I can't walk up the stairs and they don't lose respect for me, they allow me to be my whole self.
So I think friends, having amazing people as friends and having amazing people to work with makes all the difference, but it also means that I'm quite, I think sometimes kind of fearful of working with new people in case they don't get it. And I think sometimes it can be hard because I feel like I've told people what I need and it's just really hard for them to remember. So I'll say, ‘’Oh yeah I can meet any time except between one and three because I have to eat and sleep then.”
And they'll say, “Great, okay, cool, how does two o'clock work?” I'll be like “I've just, I've just said that, I just said I can't do that!” Sorry that sounds very ungrateful but I think it's hard to remember. I don't know.
It can be so invisible. Yeah, it can be so invisible. I don't know how to make it visible and I think, yeah, maybe if it was, if there was some sort of physical marker, it would be easier for people to retain that information.
And in some ways, having an access support worker is quite good because they are very visible and there's someone there to say, I'm here to support Ellie and that kind of reminds people, which is really helpful.
So in thinking about the print for the bedding, I found it really difficult to articulate and I thought that was…I was surprised by that. And so I couldn't put it into words and so I started drawing and most of the drawings involved water and that feeling of being sucked down, of having an anchor dragging you down, drowning or trying to keep your head above water and not being able to. Or there was one drawing I did where there were people that I care about and they're in a boat and I'm in the water drowning and I'm like, “I want to help, I just need to stop drowning first.” And so that feeling of wanting to contribute and wanting to help out but not having the energy to do it and feeling like you're fighting this heaviness that comes along with water.
And again, one of the drawings had these little fish of energy that just sort of arrive and then disappear in a flurry. And I was thinking a lot about feeling like trapped, and I did a drawing of me covered in a fishing net, like a big veil with loads of things attached to it: like crab lines and anchors and sea detritus, because it can feel like you're you're trapped or you're entangled in something that you can't shake off. That is a barrier between you and the rest of the world. So yeah, most of them felt aquatic and heavy.
Yeah, but it was hard and I think that's why I wanted to make this project because I wanted to understand how it is for other people and how people's fatigue might be different to mine. Because I think I don't know loads of people that have fatigue. And the people that I do know who have fatigue I don't get to hang out with very much because we're all too sick.
So I wanted to make this project so that I can understand more about other people's experiences of fatigue and maybe people that don't know anything about it, can understand a little bit more what I'm living with. And also I love print design and a really good textile.
I haven't really spoken about time and I think time doesn't operate in the same way now, like I constantly feel like I'm missing out. I constantly have a very keen sense of FOMO…and also then, I try to work out: if I lose roughly two to three hours a day, say two hours a day, 14 hours a week… And then I went back and I calculated it since I got sick and I was like “Oh I've had nearly four years less time than people, I've lost nearly four years of my life and you can get quite a lot done in four years.”
You could have, you know….I think of people when they go travelling for a year. I could do that four times nearly, it was something like 3.87 I don't know. And it means that then the time that is usable feels so much more rushed, like I already think that most people probably feel a sense of life being quite busy and quite full or… people sort of talk about a hurry sickness culture where we want to pack a lot in and we want to get more done and we want to be productive. And if you have fatigue or you live with fatigue that time is even more pressured because you're like the moment I feel well I'm like “Oh crap I feel well right now, shall I clean the kitchen, shall I write that email, shall I go for a walk, what should I do and then it becomes this…that becomes something that is depleting in and of itself
Because I get choice paralysis. I'm like “I should do something productive and meaningful before this energy evaporates”. So that's tricky.
Um yeah a very different relationship with time. And sometimes I wake up and I think ‘’Oh” you know on a weekend I think “Oh I'd planned to go on a little like…” to go and do an errand and I think “Oh well that's not happening, oh well. I guess I'm just sleeping till 11 today.” And then other times I really want to fight against it and get the thing done anyway because I know that getting the thing done will bring me joy, or bring me connection. Or yeah, if I force myself to go to the supermarket, then at least I can have a really nice meal when I get home and not be… and not be um…eating… you know, the only thing I can prepare. You know not be not going “Oh well, I guess that means it's toast again.”
um yeah I think time…time feels important. And I suppose something that would be nice is a…. a call to action of saying… I think I've already said it. But if you know people living with fatigue, to keep inviting them to things and to keep including them and to keep sending them stupid things on Instagram. And to keep to keep engaging with them even if they're not very good at engaging with you back. Because…um…it's not for…. it's not that they don't want to, it's that they can't. And that will… that is its own layer of sadness.
Umm um actually…. going back to silver linings. I think one thing that Chronic Fatigue has taught me is I'm so much more accepting of myself my own limitations and also by extension, other people's limitations. I think I've become kinder and softer and and more expansive and more able to hold that a number of contradictory things can be true at once… that….that…that people can be conflicted. Or people can be one way one day, and one way the other day and that doesn't….and that is the complexity and richness of being a human being. It's not a sign that things are necessarily wrong. So I think it's made me warmer and kinder and softer. Hopefully. As well as rageful and bitter and um and all the rest. (laughs)
So going back to symptoms…um I was trying to explain symptoms and I worked with a Chronic Fatigue specialist and they said “Oh certain personality types can be more predisposed to fatigue so anyone that's quite perfectionist or detail orientated can be more predisposed. People that have had trauma in their early lives so before the age of 25, so before your your brain has kind of settled down, when it's still plastic. If you have lots of trauma your neural pathways can be more predisposed to anxiety and fatigue and dysregulated nervous systems. And then if you have an impulse to care for other people or to look after other people… for other people's needs first…um… Or if you aspire to be high achieving which I guess links into the perfectionism, but if you want to achieve things and be successful we find that those people are often more likely to get fatigue.” And they said “Which one of those are you?” and I was like “Bingo! I'm all of them! Yes.” So I had all of the all of the factors that would predispose me to fatigue. um and I'm really curious because I feel like there's a lot of emerging research about chronic fatigue and how it might relate to trauma and I'm curious because I think some of that research is really solid; thinking of Bessel van der Kolk's ‘’the body keeps the score”, and then some of it is maybe a bit more internet quackery.
But I find it intriguing and I'm curious to know how much trauma might be related to fatigue. That's just an ongoing question for me and I also think it makes it quite hard to articulate that in workplaces. So I was talking to an organisation that I was working with and I said “Oh I might need….” They said “What does reasonable adjustments look look like for you in the workplace?” and I listed some things and they said “I don't know how we would begin to put any of that in place. We can't make adjustments like that, without fundamentally changing our organisation.”
I was thinking about how I'm very jealous of people going away for the weekend somewhere. So they'll work all week and then they'll go “Oh yeah, we went we went to the countryside at the weekend” and if I work a week then I'm bed bound for the weekend and so sometimes I have to sacrifice my social life so that I can work, and sometimes I have to sacrifice my work life. But sometimes I'll go “You know what? I am just going to go to the pub and pay for it.” And yeah, so often there's a standoff between work and life and sometimes I pick…. I often pick work. And think well I've… if I'm going to be okay and functioning at work then I can't do anything this weekend. I just have to sleep. And sometimes I say everything in moderation including moderation and I go out to the pub and then work is a real struggle. And then sometimes I'm really good and I sleep all weekend and I'm still useless at work. So who knows? There is no clear pattern um…. and I worry a lot if I do decide to go out with friends “Oh what if I am not very good company for my friends? What if I'm slowing them down?” like I remember going on a day trip with a friend, attempting a day trip with a friend, going rowing and I spent so much of my morning worrying that I would ruin the day for them and worrying that I wouldn't be fun and worrying that I wouldn't be able to keep pace um so that that's really tough… the constant feeling of not being good enough. Or not being enough. Or not being good enough and also being too much. Too much work. Too much hard work.
Eating makes me tired but I need to do it. So particularly after lunch the minute I've eaten something that means that I can't function. So if we're having lunch and then someone's like “Oh, can I just go and do this? Or could we just? Can I just ask you about this?” and I'm like “not really, because I'm barely able to sit.” Like after meals sometimes sitting up is painful. I feel like I spend…sometimes I'll go out for food and after I've eaten…um I'll just be looking at the floor longingly. Going “I just really want to lie down on the floor but I can't.” um and even in front of friends sometimes I'm like “I really want to lie on the floor but I'm not going to”
And then I was also thinking about with the temperature dysregulation, the amount of things that I kind of end up carrying around with me; so heaters fans, weighted blankets, sleep…I have a sleep kit that I take to work. Ice packs, multiple hot water bottles. In the winter I need to make three hot water bottles when I nap; one for my feet, one for my hands and then one for my nose because I've got a really big nose and it gets freezing.
So then I just have all this extra stuff and then dragging it, dragging this sleep kit to work or dragging all of this stuff is tiring in and of itself. So it becomes a kind of self-fulfilling prophecy. Even if it is quite a funny one…uh…just to arrive constantly with a suitcase full of heaters and fans and ice packs and blankets.
And it's making me think of how um when I was at school I would often feel really sick during the day and then I would perk up in the evening and I would feel so guilty about it. I'd feel so embarrassed. I'd be like “What? I genuinely felt ill today and it wasn't that I didn't want to go to school. I felt ill and now I feel okay and I want to go to youth theatre, or I want to go, and you know, be in the world because I've missed all my peers at school.” And I felt really guilty about it …and then years later I found out that actually that's quite common for people with fatigue: to feel terrible during the day and then feel absolutely fine in the evenings. And so now sometimes I work in the evenings because I can. I can do things that I couldn't do during the day. But yeah, it's tricky. I always feel like my evenings are making up for lost time.
Ummm and the insomnia is also a really big part of that. If something stressful happens during the day it's really hard for me to get my nervous system to calm back down. So quite often if I've been very stressed at 11 p.m suddenly I'm wide awake, feel great, sharp brain. But um… collaboration doesn't work like that. Sadly, I can't just call all my colleagues and go right we're having the meeting now. Umm yeah that's that's tricky. Or waking up at 4 a.m.
Um and I was also thinking about noise sensitivity. I'm so sensitive to noise and I get quite a lot of tinnitus, quite a lot of ringing in my ears. So if I'm somewhere loud, that also drains my energy. so even just sitting in a loud cafe might be tiring. And I really… I used to teach at universities and I really found that I struggled when everyone was chatting and I was having a conversation with one student…to kind of shut out the noise of the class and talk to that one person. And so it's quite nice to know that that's not just a me thing, that that can be quite common. And then also thinking about if I eat too late… if I eat my dinner too late at night if I eat even at like 5 past 8, if I eat my dinner at 5 past 8 then I am not sleeping before 2am. That's it. I'm I'm wide awake. So again lots of contradictions.
I was thinking about when I was talking about time and how time makes me more impatient as a person because I know I have such limited time in the day. I become hyper fixated on the efficiency of other people. um so for example if someone is talking, telling me a story and they're going all around the houses, I'm like “I've got about five minutes before I need to go and lie down, please can you just get to the point?” And I realised that it it has made me less patient because I know I know from the second I wake up it's like an hourglass running out of sand. I know I only have limited time left before I'm non-functional. So yeah, it makes me irritable and grumpy, which is tough and not nice for other people. Because I think they can…they can sense my hurry sickness and it's not a hurry sickness… I don't want it to be a hurry sickness at them. It's….it’s because I know that I'm fading but I'm sure it comes across as intolerant or grumpy.
I was thinking about these amazing women that have kind of modelled knowing what they want and knowing what they need and I think in some ways watching them has been an act of kind of feminist consciousness raising. In that I've watched them name things and it's encouraged me to name things. And then interestingly, I talk a lot now about having Chronic Fatigue and someone came up to me and they said uh “It's really nice hearing you talk about it. Because I have Chronic Fatigue but no one at work knows. I've never told my boss. I don't talk about it and I don't know why I don't talk about it. I should.” so I think there's an element of naming things that can be a really powerful thing to do; both for yourself but also because when you name things you don't know who else is going to see that, and hear that. And feel more empowered or feel more agency for having heard you do that. So I think, I would hope, that what I'm trying to do is take what I've learned from my friends and model that for other people. And pay it forward a bit because it's been a real gift to me. I think… um yeah, and I think, I think it's a good antidote. I'm probably one of the angriest people I know. I'm a very angry person but I also take the most joy in tiny details and so because of that, I think I notice expressions of care everywhere; particularly in design. Like I really notice it when people have been thoughtful about things and when people have designed things that are accessible and generous. And so hopefully I can pay that forward a little bit and also draw attention to where things could be better.
I suppose just because you can't see it, it doesn't mean that someone's not hanging by a thread. like sometimes I'll look very together and I'll have my lipstick on and I'll be wearing a petticoat and I'll dress like an eight-year-old going to a birthday party…and I am still driving the struggle bus. And just because you can't see it doesn't mean it's not happening