Transcript: 'We should all be allowed to say "this is really hard"'

This is a full transcript of 'We should all be allowed to say "this is really hard"' as first broadcast on 1 May. It is part of the Isolation Diaries, presented by Kate Monaghan

KATE -Oh my goodness, what a week. What a long, difficult, painful in every sense of the word, week. Okay, I didn't want to start on a downer but I did always promise to be completely honest in this podcast. Now, for those of you listening, I'm Kate Monaghan, I have Ehlers-Danlos Syndrome which means I have chronic pain in all my joints. It's caused by the joints being too hyper-mobile, hyper flexible, and so yeah, that causes pain. I've got endometriosis so that causes pain, and the pain is chronic so it's always there, but at a level that I can cope with usually, and then some days it's not, as you will hear soon enough.

Myself and my family, that's my wife, Holly, who's on immunosuppressants, so she's had a kidney transplant 11 years ago, and three year old daughter, Scout, have been isolating now for, oh, seven? Eight? Six? Seven…? Who knows? I think it's seven weeks, and I honestly think this week has been the hardest. I guess the first few weeks it was a bit of a novelty staying in, spending lots of time together as a family, watching these, you know, just unbelievable updates happening on the news, wondering how it was all going to pan out. The whole time there's been a level of anxiety, but it was at times as if we were in our own little bubble, but this week, oh man, it's been such a different story and my pain has really flared up and my emotional fed up-ness, if that's even a word, has just reached new heights, I tell you.

So, as always, my recording equipment hasn't left me this week as I bring you an honest audio diary, and I'm going to warn you, it's not the most upbeat one I've ever made I'm afraid, but if anyone is feeling upbeat in all of this then I salute you. So let's start with a thoroughly miserable Monday morning.

[music]

KATE -I need you to get me dressed.

HOLLY -Okay. Do you want to wear this top?

KATE -Yeah.

HOLLY -Okay, well put your arm up.

KATE -No, because it really hurts. Argh.

HOLLY -It's all right, all right… Just, gently does it.

KATE -Oh don't, you're not being gentle though.

HOLLY -This is the only way to do it.

KATE -Ah…

HOLLY -We could put a shirt on you today and then that might be easier than kind of going over your neck and shoulders. What shirt do you want?

KATE -Well, I think I literally possess one shirt, so that one will be fine.

HOLLY -What, the butch one or the really butch one? [laughter] Is that really homophobic? This one? This is nice.

KATE -Yeah, that's fine.

HOLLY -It's cute. There you go. Put your arm out.

KATE -The weather's rubbish. I can't do anything. Scout's already being a misery guts and I won't be able to get her out of the house because I can't push the buggy, I can't do anything.

HOLLY -I don't know, we'll have to do some indoor playing or Lego or a Disney movie, that kind of thing. You might feel better if you have a nap.

KATE -It's like nine o'clock in the morning, I'll just go back to bed. [laughter] I actually would like to do that. We'll just eat cake all day instead.

HOLLY -Why do you think you're so sore today?

KATE -Oh, I don't know.

HOLLY -Did you sleep funny or…?

KATE -No, I think it's just like the build-up of like…

HOLLY -Not being able to do your usual thing?

KATE -Yeah, like none of my normal pain management things are available to me.

HOLLY -And also it's hard to tell Scout not to jump on your back when you're not looking and things like that.

KATE -Yeah, and she wants to be picked up and I just find it so hard to say no because it feels like that's part of what you should be able to do as a mum is pick your kid up. Normally it's fine because we're normally together a few days a week in terms of she's at preschool quite a lot, but if she wants to rough and tumble play that's…

HOLLY -All the time.

KATE -Like on the trampoline we love play fighting, horsey rides, you know, piggy backs, that kind of thing. It's hard because you do it once and then she's like next day…

HOLLY -Do it all the time.

KATE -"Why can't you do it?" Exactly, and you can't really say, "Well today, Scout, I'm in loads of pain so I can't really do it." And she said to me, "Have you broken your bone, Mumma?" and I was like, I'm going to say yes. And I was like, "No, I haven't broken my bone but I've got bad bones." She doesn't really get it.

HOLLY -She told me the other night she wants a wheelchair like yours. I thought that was really sweet.

KATE -Did she?

HOLLY -Yeah.

KATE -That's cute.

HOLLY -I know.

KATE -I love her to death and I want to pick her up and I want to do all those things.

HOLLY -I know, you're really great at playing all those kind of like rough and tumble, I'm a doggie, I'm a horse games.

KATE -But normally it's doable because it's like for like half an hour after preschool…

HOLLY -Yeah, if that.

KATE -If that, and you know, it's like little bits but now it's just constant, constant, constant.

HOLLY -But, you know, we just need to manage it today and that involves you not doing physical play.

KATE -Well, today and the next however long until this feels a bit better I guess.

HOLLY -All right, Milo. [cat meows] I know, Milo, yeah.

KATE -Oh, I read a BBC article the other day about how cats don't get Coronavirus.

HOLLY -Oh, good.

KATE -So that's really good, but they could spread it on their fur.

HOLLY -Yeah…

KATE -You're like I'd die for the cat. I'd rather cuddle them than have to… I'll take a risk with the cats.

HOLLY -Shall I bring you some breakfast in bed?

KATE -Oh my god, as if that is ever going to happen. [laughs]

HOLLY -Oh, gosh.

KATE -You couldn't even keep a straight face when you said it. [laughter]

HOLLY -I do.

KATE -When?

HOLLY -Okay, maybe not breakfast but I do when I come and wake you up after you've slept in, I bring you a cup of tea.

KATE -Yeah, that is true. Oh god, she's shouting us. You go ahead.

[music]

KATE -Right, tell me where we are, Hol?

HOLLY -Yeah?

SCOUT -I did baa…

KATE -Is the dog saying baa?

SCOUT -Yeah, that one.

KATE -I think it's sheep.

HOLLY -Oh.

KATE -We are in the countryside.

HOLLY -In the countryside, yeah, walking round a beautiful reservoir and it's sunny and it's amazing. And there are trees and a blue sky. Yeah, I have left the house in the first time in six weeks.

KATE -Six and a half.

HOLLY -Six and a half and it feels amazing.

KATE -Isn't this against the rules?

HOLLY -Well, we've discussed this haven't we and you're allowed to drive for exercise, so we drove, what ten minutes?

KATE -You're not allowed to drive anywhere. You're not allowed out of the house are you?

HOLLY -I guess… I guess not no, but you've got to weigh up everything and I think we did, we weighed up everyone's mental health, including Scout's. The fact that we literally haven't bumped into anybody, because we're in the middle of nowhere. Like I haven't even walked past one single person. I don't know, like I'm not a rule breaker, but I think it's an individual thing.

KATE -Yeah.

HOLLY -And it's felt so good to be out, like the air feels different, there are new sounds, and I can't stop looking at everything, like oh a tree! Oh, look at this, a duck. And Scout's made up about it and it's also like it's really good to get my legs moving.

KATE -Yeah, it felt like you were turning into stone before.

HOLLY -Yeah. Oh, we've come to a gate.

KATE -Yeah, it's locked. This will be interesting. What are we going to do now? If we turn back it's going to be too much for your little legs isn't it?

HOLLY -Yeah, I definitely can't go back.

KATE -Scale a wall?

HOLLY -[laughs] Yeah.

KATE -Yeah, because Scout was feeling really… She couldn't sleep the last few nights and we saw our neighbours, Scout and I saw our neighbours, and she kept saying, "The doctor says mummy's not allowed out of the house. The doctor says mummy's not allowed out of the house," and we could just tell that that was her anxiety.

HOLLY -Yeah, well once I had a chat with her, it was about nine o'clock and she just was unable to sleep and she just wanted to be cuddled and chatted to her and I said, "You know, people are getting better, it will get back to normal at some point." And I told her that, you know, the doctors and nurses were fighting really hard to make people better and the scientists and stuff and that maybe soon I could go on a walk with her. And her face just lit up and she was asleep within five minutes.

KATE -It's what she needed wasn't it, a bit of normality.

HOLLY -Yeah, exactly.

KATE -And that's what we're giving her, so yeah, it's against the rules, we are renegade rule breaker rebels in the middle of the countryside.

HOLLY -Plus we're about to now climb over a wall.

KATE -Oh god. Okay. This is not going to go well.

[music]

KATE -So it's about 2 am and I am feeling pretty crappy. I'm in my bathroom and having to whisper because Holly and Scout are both asleep in the bed [furniture scrapes] oops, god… next to me. Well, in the bed next door. And I'm eating sweets. It's a night time sugar thing. I'm in a lot of pain and I can't sleep and anyone with chronic pain knows this really crappy cycle that you get into which is you're in more pain so you can't sleep because of the pain and sleep is when your body heals you.

With EDS your joints over extend in normal everyday life, so whatever you're doing your joints kind of move too much and then that causes like little tears of the bits around your joints because they've gone too far. And they get mended overnight and you start to feel… Oh, I'm dropping my sweets on the floor… And your body mends itself in sleep is what I'm trying to say. But if you don't get that sleep your body doesn't have the chance to heal itself. You can't sleep because you're in pain and then you don't sleep which means your body can't heal itself and make you feel better, so you're in more pain. And you're in more pain so you can't sleep. You don't sleep so you can't heal yourself and then you're in more pain.

So it's a really bad cycle, which I am currently in. I kind of know why. I feel like my base level of pain has been increasing over the last few weeks. I feel like I've got like a base level that I'm used to and that I can cope with and then the last few weeks that's gone up, for various reasons like not being able to go swimming, not being able to do my normal activity, having to take Scout out for a walk on occasions which is really quite hard for me. EDS is a weird thing where you're in pain whether you do something or don't do something. You're in pain all the time but if you don't do something then your body seizes up and it really hurts and you get pain from that. And if you do too much then your body seizes up and you get pain from that.

So you have to like walk this line which I'm really expert at walking now. I know how much I can do, I know how much I can't do. I know how to pace and plan my life, and all of that has just gone out the window. These last couple of months it's all gone and I can't get it right because I can't do the stuff that I need to do. And I love Holly and Scout to death, I absolutely do, but there's just no break from them, like even at night time Scout's in our bed so there's no break from her there. If I go out I have to take Scout with me because that's the only way she'll get out of the house because Holly can't go and take her out and give me a couple of hours off.

I used to love the days when Holly would go to London for work and Scout would be at preschool and I'd have the house to myself and I would just do whatever I wanted to do, like potter around, do my work, just have quiet. And that just feels like a dream at the moment. This is really hard. It's really hard. I think we should all be allowed to say this is really hard.

[music]

KATE -Hey, Hol.

HOLLY -Hey.

KATE -Thanks for letting me use that space.

HOLLY -It's that time of the week again. What is it?

KATE -Go on, you do it.

HOLLY -Isolation issues, issues, issues. Is that it? [laughter]

KATE -That's close enough.

HOLLY -Okay.

KATE -Nice. So do you want to go first or do you want me to go first?

HOLLY -You can go first as long as you don't talk about what I think you're going to talk about.

KATE -That really horrible, mean, awful thing you did to me?

HOLLY -Oh, no!

KATE -Because that is definitely going to…

HOLLY -It was a joke.

KATE -So I was feeling pretty low the other day and Holly had been cooking and I came downstairs having put Scout to bed and Holly turned round to me and said, "Would you like a glass of pineapple juice?"

HOLLY -And there was a glass on the counter.

KATE -And there was a glass on the counter, and we had a pineapple in the fridge.

HOLLY -Which I forgot.

KATE -And so I thought, oh pineapple juice? That sounds delightful.

HOLLY -Hmm-hmm. And then before I knew it, literally it was one of those kind of, I don't know, slow motion things, but you grabbed the glass and you started like downing it.

KATE -I was really thirsty and I was really excited about having pineapple juice.

HOLLY -And I was frozen to the spot, like literally inside I was like, nooooooo…

KATE -Yeah, because it wasn't…

HOLLY -But then you started gagging because it wasn't pineapple juice, it was chickpea water. I'm a horrible person.

KATE -And it was the most disgusting thing.

HOLLY -You see I kept it because you can make chocolate mousse out of chickpea water.

KATE -Oh, no.

HOLLY -That is a real thing. Google it, it's a real thing.

KATE -Oh my god, it was awful. And it was like the straw that broke the camel's back wasn't it?

HOLLY -Yeah. First of all you started spitting it out in the sink and then…

KATE -And then I was gagging.

HOLLY -And then you were gagging.

KATE -And then I just burst into tears and ran upstairs.

HOLLY -Yeah.

KATE -In the way that I can run. [laughs] Yeah.

HOLLY -Yeah. And obviously I followed you up and I think it had been the straw that broke the camel's back, because by the time I got up there you were like, "It wasn't about the chickpea water, it was everything."

KATE -I had such a good cry though.

HOLLY -You did, and you don't cry very often.

KATE -No, so sometimes it's needed.

HOLLY -Yeah, and normally when you have that stress you're like right, "I'm going off for a couple of hours. I'm going to go to the gym or to the pool," and then you come back and you're like, "Oh my gosh, I feel so much better."

KATE -Yeah, I have a bit of time to myself. I have a swim and sit with my book.

HOLLY -Read a book. Yeah, you come back and you're like, "Yeah, I feel loads better," and I was thinking this thing is bothering me because of this and whatever, you go through it in your head.

KATE -Yeah, and I work it out and then I come back and talk about it.

HOLLY -But instead there was like this explosion.

KATE -Because there's no time for that. There's just no time for me to have space anywhere. Yeah, I mean the cry helped, but still, not nice.

HOLLY -I'm really sorry.

KATE - I know. It's fine. Right. Do you have an issue?

HOLLY -Throwing away perfectly good stuff.

KATE -Oh, no.

HOLLY -Yeah.

KATE -It's not perfectly good though.

HOLLY -I have to go through the bin and I often find like my actual possessions. Childhood treasures.

KATE -Childhood treasures. Like what?

HOLLY -Yeah. Anyway, I was sorting out Scout's clothes in the bottom of the wardrobe and I found a, you know, nice rucksack which I opened and I was like okay, it's just full of your stuff and you're like oh yeah, cool. Anyway, five minutes later I go into the bedroom and what's sitting in the bed is this full rucksack not even opened, just like sticking out of the bed. So I went and sat and got it out and what did we find?

KATE -Well, you found an old watch of mine, which is good because I did want to keep that watch so I'm very glad because I didn't think I'd ever find it.

HOLLY -Yeah, but also like, go through it. My god.

KATE -But have you ever noticed anything that's gone missing?

HOLLY -Yeah, of course. I'm always like where's this? Where's that?

KATE -No, because you've got so much stuff. I reckon I could throw away a third of your belongings…

HOLLY -No.

KATE -And you would never know.

[music]

SCOUT -Will you watch me?

HOLLY -What am I watching you doing?

SCOUT -My trick downstairs on the sofa.

KATE -Your trick downstairs on the sofa.

SCOUT -Yes.

KATE -Okay, so if I watch the trick on the sofa will you let me get back to work?

SCOUT -It won't take long.

KATE -Do you promise? Is that a deal?

SCOUT -Promise. It will just take four minutes.

KATE -Four minutes. Okay, come on then.

SCOUT -Four minutes isn't long.

KATE -Okay, four minutes isn't long. Holly?

HOLLY -What did you say?

KATE -Aren't you meant to be looking after our child?

HOLLY -Yes, she didn't want me to play with her or anything.

KATE -Yes, but she came up and is disturbing me.

SCOUT -It's going to be amazing, this.

KATE -Okay, so you're holding the handles of the door. Wow! And then you jumped off. Brilliant. Good job.

[music]

KATE -Right, okay. Back to the emails. So we have had some really lovely emails this week and I have not felt well enough to do them justice I'm afraid because you guys have come with so much great advice. And just, oh I feel so lucky to have you all, like honestly, it's brilliant. Andrea Kierstead, thank you so much for… She sent me a link with a load of scavenger hunts on Facebook that we could do with children. There's like a senses scavenger hunt. A rainbow one, so you find something red, something yellow. Name a fruit that's red. All of this is so useful, in fact I might go and try doing one of these this afternoon because Scout's stopped wanting to leave the house completely now. So we're going to have to find inventive ways of getting her out at all. So yeah, this could be just what I'm looking for, so thank you so much, Andrea.

But the final email that has been really lovely to get was from a lady called Liz. "Just started listening to your podcast. I became hemiplegic in September 2018 when I randomly had a brainstem haemorrhage at the age of 22, two days before my last year of university. I was in neuro rehab for a year and trying to get independent enough to go back to finish uni this year using a wheelchair. I am trying to educate myself as a newly disabled person and very much enjoy the podcast."

It is great to have you along, Liz, apologies that it has to be in this fashion. Now she says, "When lockdown happened what was weird for me was I had my own lockdown last year in care. I've already had to get used to an inaccessible world and revise how I entertain myself and be creative. It's strange seeing people having to wrestle this for what is a reality for lots of people."

Now that is something that I've seen time and time again. A lot of disabled people talking about that this is a reality for a lot of us and now all of a sudden everybody's having to get used to it. All these things that weren't accessible to people before are suddenly becoming accessible to everyone. For example, working from home. I mean, how often have you been told in the office, "It's not possible to work from home. You can't do this job from home," and now all of a sudden it's oh, everybody's able to do their job working from home. These are things that should have been accessible to disabled people long, long ago. And part of me does wonder, is this going to be a sea change? Is this going to be the moment that things change for people? I don't know, I don't know if it is, but I really, really hope so.

Liz goes on to tell me how she's trying to do her physio at home by walking with her flatmate doing laps of her 3 x 2 bathroom, which I think is excellent because I haven't even bothered doing that and I'm going to have to start doing something. And Liz, you being able to keep going with your rehab, I need to probably be keeping going with my stuff as well because I am really not doing it at the moment and it's a tough-y but, you know, we need to keep going don't we? We really do.

Now Liz also says something that I think is very poignant, and this is I think that this is a time of great humility where everyone has to accept that nothing is in their control and there's sort of a lightness in accepting that. Liz, you are very wise. You are my Yoda of the week, and I'm going to try and take some of the lightness of not being in control of this situation and let it go because that's what I've really struggled with recently, is just letting go, that this is the situation we're in. I keep thinking I have to find ways around stuff, and I can't, I can't find answers to things, I can't find ways to make everything better, as much as I'm searching for it.

So Liz, my Yoda, I appreciate everything you've told me. So yeah, thank you, Liz. And if you want to send me an email please do. I read all of them and I appreciate every single one. My producer gets the emails for me and her email address is [e-mail]. Amy is A-M-Y. If you've got ideas for exercise that would be really helpful, and I'm going to go now and start some laps of my own bathroom I think.

[music]

Fortunately I am feeling a bit better today, so I managed to play a scavenger hunt game with Scout that was recommended. It is super simple, you just write a list of items to be found in the house and off they go. I mean, Scout always wants us with her but still, off we all go to find it. And we had something crunchy, something smooth, something soft, something white. You get the idea. And then once the rain goes away we'll try it again, but in the garden.

I'll be back next week with more documentation of my life, I mean, as egotistical as that sounds, but I actually do like sharing it with you all. And please remember to recommend the Cabin Fever Ouch series to anyone who might be a little bit lonely, stir crazy or in a similar boat to myself and Holly, because hopefully listening in can make them feel just a little bit less alone. Have a good week.