Transcript: 'I feel a lot of pressure to keep Holly alive'

This is a full transcript of 'I feel a lot of pressure to keep Holly alive' as part of The Isolation Diary and first broadcast on 24 April.

KATE -Blimey, how are we six weeks into isolation? That's like the equivalent of school holidays. As a kid I used to think the school holidays went on forever, and now I get why that is, because six weeks is a long time.

So, for those of you new to the Ouch Cabin Fever podcast I'm Kate Monaghan. I have Ehlers-Danlos Syndrome which is a chronic pain condition in all my joints. And I'm isolating with my wife Holly and our three year old daughter Scout. Holly has had a kidney transplant and so is on immune-suppressants, so that means she has no immune system, so we're being super strict and we've cut ourselves off from the outside world a week or so before the rest of the UK did. For those of you that are regular listeners you'll know that the last six weeks have been full of nerve wracking food deliveries, experimental haircuts and debates between Holly and I if we're doing the right thing. And to be honest, we're still not sure if we're doing the right thing. But I'm bringing my recording equipment with me every step of the way so you can hear what it's really like in our household. And I'm always honest. This is basically my online audio diary.

[Music]

SCOUT -[Singing]

KATE -Pass me that guitar and I'll see if I can find Frozen if you want, see if you can work out how to play it.

SCOUT -No, but I just want you for…

KATE -But mama has to do some work.

SCOUT -No, I know, but just one minute.

KATE -No, don't just pull me off, bubs, because I'm sitting working.

SCOUT -Oh.

KATE -Just to set the scene here: I'm sitting trying to work and Holly and Scout have both got guitars that they don't know how to play. And singing. [Background singing] It's not really conducive to work.

HOLLY -I think you just need to join in, Kate.

KATE -[Laughs]

HOLLY -[Scout singing along] If you're older everything makes sense. That's a good line, Scout.

KATE -That's what Olaf sings.

HOLLY -Isn't it?

KATE -Yeah.

HOLLY -When you're older everything will make sense.

KATE -Yeah.

HOLLY -Let me tell you, Olaf, it doesn't.

KATE -It doesn't always work out that way.

[Music] So, we've just had another battle with Scout over dinnertime. It's just really difficult because she's never been an amazing eater, so we've been fairly relaxed about food and just like, oh you know, she'll eat when she's hungry, and there are some vegetables that she'll eat and stuff. But one of the things that made us relaxed about food was because at preschool she would get good food that she'd actually eat. She'd eat so much random stuff at preschool that she'd never eat here: a sardine curry they made them one day. And I was like, "There's no way she ate it", and they were like, "Yeah, Scout ate all her lunch". And she was like, "I had all my lunch today". And I was like, "Why will you eat that there?" but she does. And they'll put - hello Milo - loads of vegetables into her food and she just eats them happily. So, we've always been like, oh it's fine that she doesn't eat that much. But then here at home she's just started to reduce the amount of food that she will eat so much. We make her nice food and then she just refuses to eat it. I know everyone says kids won't go hungry, but she kind of seems to. And then at night time she'll just have snack bars before she goes to bed to fill up. So, it's not the worst thing in the world, but it's just adding another layer of stress that we just don't need. Now obviously she's not going to preschool she doesn't have that time of where she'll eat because all her friends are eating. It doesn't matter whether we sit at the table and we all eat together or whether we let her go and sit in front of the telly or whether we let her eat outside or we make it into a picnic, we've tried so many different things. I'm sort of losing the will with it a little bit and I don't really know what to do. [Music]

HOLLY -Oh my gosh, what are you doing?

KATE -I'm cleaning out the drawers.

HOLLY -Why are all my things all over the floor?

KATE -Oh look, that's necklaces you used to wear.

HOLLY -Oh yeah, I've been looking for those.

KATE -Yeah.

HOLLY -I just got a nice call from the government.

KATE -You got a call from the government?

HOLLY -Yeah. I just picked up my phone, it was a random number, and a very nice man asked me if I was doing okay and whether I had enough things to eat.

KATE -Oh my god, that's so cute.

HOLLY -It was really sweet. And he was like, "Are you keeping well? And who's the vulnerable person in your house?"

KATE -Oh, did he not think it was you?

HOLLY -No, they never do. Ever.

KATE -No, because you sound fine.

HOLLY -Yeah. And he asked if we needed a government food box.

KATE -Oh, and what did you say?

HOLLY -I said, no.

KATE -Good, because we don't. I don't want to take it from someone else.

HOLLY -I said we had managed to get a delivery slot from the supermarket. And then he suggested another supermarket and they've got loads of slots available, which I hadn't thought of.

KATE -Oh right. Who's that?

HOLLY -Iceland.

KATE -Oh, interesting.

HOLLY -Apparently they opened up loads of slots this weekend, so that's quite a good one to try. Yeah, it was just nice to be called and checked, because I could have been starving and alone for all he knows.

KATE -It's taken five weeks, but.

HOLLY -Yeah, but there are a lot of people and I'm not on the top of list of needy people. And on the government form that I filled in, I think you got a few options, one was like have no food, need help, and I clicked the one that had help with neighbours and stuff, so wasn't as desperate.

KATE -Oh that's good, yeah, they must be going through them in a priority list.

HOLLY -They must be.

KATE -That's so cute. I kind of love that.

HOLLY -I know, it made me feel all warm inside.

KATE -[Music] I'm in my car on the way to the recycling, because this is as exciting as my life gets. I swear if you'd told me on December 31st of 2019 this would be the highlight of my week then I would have said you are a crazy loon. But look where we are now! Oh, I've gone the wrong way. Oh no. Oh well, never mind; I'm not in any rush to go anywhere else so I can have the time to go the wrong way. I'm going to recycling, and it's my one time when I am out of the house and I'm on my own, and I can breathe. I feel like - no offence, I know I keep having to say this, I do love her very much, it's just very challenging day to day with a three year old, who is a very extroverted three year old. Like she will say hello, and talk to anybody. When people walk past our garden she shouts at them so that she can have a conversation with somebody who isn't us.

We've had a funny couple of days. I think Holly's really feeling it now. We're into week six of being isolated and Holly not going anywhere, and she's done so well, really well not getting out of the house. And also she's started to see people posting; her uncle has got cancer and he's doing chemotherapy and he got told today that he would probably need to be locked down until Christmas. And he obviously messaged her about it because he knows she's in a similar boat; not that she's got cancer, thankfully, but that she's one of the people who is shielding from life. Yeah, he told her that it's looking like it's going to be till Christmas, and that upset her quite a lot, and it's totally understandable that that upset her. When we're in our home I feel safe, like we feel safe in our house, and in our garden we feel safe. And then something small will happen, we get a delivery, and then it's like ooh okay, let's be really careful about this. And then I'll go out of the house and I'll touch something or Scout will touch something, and then I'll notice that she touches her jumper or I notice that I tuck my hair behind my ear. If you don't keep control of it your brain just starts going, right is the virus here, is it in my head, do I have to go home and have a full shower. And it's really tempting to want to go home and have a full shower. But we can't do that; that's not possible that every time we come back into the house we decontaminate completely because the first thing Scout does, although we have taught her now that she has to go and wash her hands before she goes and hugs Holly, we can't be like, all clothes off, into the shower you go.

I feel a lot of pressure to keep Holly alive. I feel if she gets the virus it will be something that I've done; it will be something that I've missed; and that it will be my responsibility because I didn't do something. That's quite a hard thing to have on your shoulders. I would never forgive myself. And yet I also find that as time goes on and nothing's happened I do feel like I'm getting more complacent about certain things and thinking that certain things are okay - and maybe I shouldn't. And we spend our whole time telling Scout, we're fine, there's nothing to worry about, don't worry about it, we're fine, we're not going to get the virus. And it's almost like we talk ourselves into that as well: it won't happen to me, it won't happen to me. It could do. It's just like where is the limit, where is the risk benefit analysis of what we're doing, getting Scout out of the house to feed the ducks? What's the cost benefit analysis for mental health versus physical health?

And I think it's really frustrating because Holly doesn't feel ill and she' not an ill person. It's actually me that struggles much more day to day than she ever does. But she's the one that has to be stuck; she's the one that we're shielding; she's the one that we're doing all of this for. And I feel quite a lot of pressure and it's quite a lot. But you know what, the sun's shining, and I'm sure you're bored of me saying it but the weather makes such a difference: being able to be in the garden, Scout being able to be on her trampoline to get rid of her energy is really important and it's great, and long may it last, seriously. We're grateful that none of us are ill. The tiniest bit of me just thinks I want to just get it and get it done with, and then we're done and we can move on and it's like okay, we've done it now, everyone's come through it and now we can go back to normal life. And I do wonder how many people feel like that; how many people are thinking actually I'd rather just have it than have to stay in all the time. And that if the government start this traffic light system of green people who've had it and they can move around freely are people going to go out of their way to get it? I don't know, is that crazy? Would people do that? Would we do that? No, we wouldn't do that, definitely wouldn't do that. But like I say, tiny part of me thinks it would be easier that way.

Anyway I've arrived at the recycling and I have a job to do so I can feel useful, so I'm going to go and do it.

[Music] Okay, just taking a rare moment of quiet to try and do some DIY. I'm trying to hammer in the world's tiniest mirror for our daughter's bedroom. Anyway, what were you saying just a minute ago?

HOLLY -Well, it's a beautiful day and I was saying how I'd love to be outside right now. Well, outside no; I mean I'd love to go for a walk right now and see something different other than our garden.

KATE -So, I said, do you want to, like do you want us to make that happen somehow?

HOLLY -I don't think I can really, until everything relaxes a bit I just think it would be a stupid thing to do. I think if I went out for a walk in the sunshine, I went to feed the ducks, like you take Scout to, it would be a big boost in serotonin and yes, I'm outside. It's just not worth the risk, is it? Even though you don't really see anyone, I don't know, it's just…

KATE -We can go out without seeing anybody, that's for sure, but.

HOLLY -I know, but it feels like breaking the rules. The thing is we'd do it once and I'd be like, oh that was so nice yesterday, look at all these ducklings, blah, blah, blah.

KATE -The ducklings are cute on a very cool pond.

HOLLY -I know.

KATE -Sorry.

HOLLY -I'd want to do it again and again. It'd be like, well it was fine the other day. And it's just not, I mean…

KATE -Weren't you reading on Facebook last night about somebody, because you felt really down last night, didn't you? It's because people were saying that lockdown for shielded people is going to last like a year.

HOLLY -Yeah. Well, I've read a year, I've read 18 months, I've read till autumn, I've read all sorts of things. Some people were saying in three weeks' time they're going to be going back to school and stuff. I don't know if I believe that. But still in three weeks' time maybe everything will be lifted a bit.

KATE -But not for you.

HOLLY -But not for me. It's almost easier that everyone's on lockdown at the moment. Do you remember the first week when we were on lockdown and no one else was?

KATE -Yeah, that was really hard.

HOLLY -It was really hard. People were kind of saying, "I don't know why you're bothering" but also…

KATE -I'm just going to hammer this in now. Are you ready?

HOLLY -Oh god. Watch your fingers.

KATE -Okay. [Hammering] That didn't go in the wall. Why didn't it go in the wall?

HOLLY -Because you don't know what you're doing. Get those Velcro things again.

KATE -I do. Anyway, we were talking about the lockdown finishing. But yeah, it was a lot easier when now we know everyone's in the same boat.

HOLLY -Yes Milo. Yeah, and everyone will be really excited and doing stuff and I'll be like, argh.

KATE -I know, people start going back to school and stuff.

HOLLY -Right, that means Scout wouldn't.

KATE -No. The only way she could go back is if she then isolated from you for 14 days after she'd done her run at preschool.

HOLLY -Yeah, well at least it's not proper school, is it? It's optional whether she's at school at the moment.

KATE -And also she doesn't understand.

HOLLY -And she's not that fussed.

KATE -Well, no, she'd rather be here with us I reckon.

HOLLY -Yeah.

KATE -But she does miss her friends.

HOLLY -Yeah, she does.

KATE -And I think more than anything we miss having her go to preschool.

HOLLY -Yeah, but then we don't have any real work anyway, so.

KATE -You're on a downer today.

HOLLY -No, I'm not. I've had a really nice day.

KATE -Oh okay. Is it just that I ruined the wall?

HOLLY -Yeah.

KATE -Okay.

HOLLY -Please stop doing DIY.

KATE -[Music] As ever you've been sending us in your amazing emails. I've just been reading one of them. Hello? Oh, she's talking to the cat not me; I thought Holly was talking to me. Oh hi.

HOLLY -Hi. What are you doing?

KATE -Recording.

HOLLY -What are you recording?

KATE -Well, we've had a very lovely email, Hol.

HOLLY -Ooh, let's see.

KATE -This one is from Laura, aged 28, from Derbyshire who says that she's been really enjoying the Ouch Cabin Fever episodes, and she's been doing what I've been doing which is avoiding a lot of the Covid-19 discussions because it's overwhelming, but Ouch is the exception because it's so relatable and human.

HOLLY -Ah.

KATE -Have you been told you're relatable and human before? No.

HOLLY -No.

KATE -Ah, that's nice.

HOLLY -It's really nice. I'm glad people are actually listening.

KATE -Yeah. So, Laura thank you for your email. And it's really nice to hear that you're having a similar time with your endometriosis. I say nice to hear, but it's not nice that you're having trouble. Holly's just doing her pills over there. But I'm sorry you're having problems with yours as well. It really sucks. Missing surgery is awful, isn't it, just is awful.

Oh, while you're taking those tablets, is it weird taking immune-suppressants when you need a good immune system at the moment?

HOLLY -You need a good immune system at all times, don't you? I've just got used to taking it over 12 years, so no.

KATE -You don't think about it anymore at this point?

HOLLY -No, because the most important thing to me, apart from obviously not getting Covid, is keeping my kidney safe, and that means I need to trick it to staying in my body basically.

KATE -Just tell me in layman's terms why immune-suppressants work? Why do you have to not have an immune system?

HOLLY -Because my kidney is like a foreign body, isn't it, it's come from someone else, and so we need to stop my body fighting it and going, what the hell is this in your body, we need to reject it.

KATE -So that your immune system would fight it off thinking that it was something bad?

HOLLY -Yes, something bad. It's like if you get a splinter your body pushes it out eventually, because it needs to get it out. That's what my body would do: it would reject it; I would go into rejection.

KATE -Laura, sorry, we keep getting off the beaten track here, but she's suggesting doing yoga in absence of your normal swimming, and she says it helps. And she also says it's sort of annoying because it's the kind of irritating thing people suggest to me when I mention pain or anxiety, "Have you tried yoga?" rolly eyes emoji. Turns out it's quite helpful. Dammit. That is my response is please don't tell me to do yoga, because everyone tells me to do flipping yoga.

HOLLY -Yeah, and you did try it for a bit, didn't you, and it didn't go too well.

KATE -No. but I think I need, what's the word, an accessible version of yoga, like a modified.

HOLLY -I wonder if that exists. Or you could modify it yourself though; just don't do things that you know is going to hurt.

KATE -Yeah.

HOLLY -Don't eat so much chocolate and cake. [Laughter] I'm exactly the same.

KATE -I was going to say, I don't think you can speak on that subject.

HOLLY -No, I definitely can't. I'm going to be rolling out of this house.

KATE -Yeah, I think we all are, which is fine. I don't mind. But also I don't really want to put on loads of weight because it's just not healthy.

HOLLY -It's not good for your joints either, is it?

KATE -It's really bad for my joints and it's really starting to feel it. Anyway, you know what I'm going to say, because we're climbing into bed.

HOLLY -Yeah.

KATE -It's time for…

HOLLY -And what did I say to you a couple of days ago, "Well, there's my isolation issue then, isn't it?" as I stormed off.

KATE -Hey, let me do the…

HOLLY -Don't do the song. Don't do the song.

KATE -It's time for isolation issues, issues, issues, iiii…issues, issues.

HOLLY -That was a bit like more of a mixy version.

KATE -Yeah, that was the remix.

HOLLY -God! I'm going to start this time because I never start.

KATE -Go on then.

HOLLY -I'll continue stroking Felix. He's purring nicely. You kind of think you're a DIY superwoman.

KATE -No, I don't.

HOLLY -No, my turn to talk. The thing is that's all really nice and stuff, but you don't consult any instructions, you don't watch any videos, you don't call anyone, so when anything breaks you just get out this toolbox, dust it off and just start attacking whatever it is.

KATE -[Laughs uproariously]

HOLLY -You were going to put up a mirror the other day; you'd no idea how to do it. And two seconds later you'd got a chunk out of the wall, which I don't even know how it happened. [Laughter]

KATE -Oh my god, I just did a nervous fart!

HOLLY -That's so normal round here. You're going to blame your endo or something now, aren't you?

KATE -Okay, my turn.

HOLLY -Okay.

KATE -You got loo rolls out of the bottom of the stairs today, like the under stairs cupboard.

HOLLY -Yes, I did.

KATE -You got loo rolls out and then you just left them.

HOLLY -On the bottom of the stairs. It's called a stair pile. Everyone has a stair pile.

KATE -Yeah, how many times have you walked past that stair pile without moving the loo rolls? That's my issue: the stair pile that you never do anything about. [Laughter] Have you learnt anything new about me from this time?

HOLLY -No, I don't think I've learnt anything. Have I? No, I don't think so. I think because we work together, live together…

KATE -And parent together.

HOLLY -…and parent together there's nothing.

KATE -We're together all the time.

HOLLY -Yeah, and have been for nine years or so, so no. What about me though?

KATE -I've learnt that you've done very well actually.

HOLLY -And?

KATE -What's this about, jazz hands about?

HOLLY -Green fingers! [Laughter]

KATE -Oh yeah.

HOLLY -You kept saying, "Who are you? Who did I marry? Why are you gardening?"

KATE -Yeah, I didn't marry flipping Charlie Dimmock. I thought I married you, and all of a sudden you've become a gardener.

HOLLY -Yes, I have. It's definitely felt harder this week not to go out. A combination of all the cherry blossom coming out and the good weather and just ducklings and yeah, spring, isn't it?

KATE -Yeah.

HOLLY -You want to go and see some nice signs of spring.

KATE -Who are you? Cherry blossom! Since when do you care about cherry blossom! [Laughter]

HOLLY -It's really pretty.

KATE -[Music] So, we've had a week of chaos, but I guess to be honest there's no one else I'd rather isolate with. Hm, yeah, I guess there's no one else I'd rather isolate with.

If you have any more ideas how we can entertain a three year old, keep our mental health in check or survive DIY domestics then please do get in touch with my producer Amy, at [e-mail], because we all love to hear from you. Right, I'm off now. I think it's time to get my guitar and actually go and join Holly and Scout for some singing.