This is a full transcript of 'It would be tempting fate to pack a hospital bag' as first broadcast on 29 April as part of the Isolation Diaries presented by Kate Monaghan.
KATE -Wow, it's been another week in isolation, Cabin Fever friends, 35 days to be precise since myself and my family cut ourselves off from the outside world.
For those of you who are just joining me on this journey I'm Kate Monaghan; I have Ehlers-Danlos Syndrome which means I've got chronic pain in all my joints and I can't walk very much, as well as mental health stuff and other things going on. I've been married to my wife Holly for, ooh, nearly six years now, and Holly is on immune-suppressants because she is the recipient of a kidney transplant 11 years ago. This means she has no immune system, and therefore falls into the very high risk category, so we started isolating a couple of weeks before the government announcements for everyone. We also have a three and a half year old daughter Scout, who is brilliant, cute, demanding, hilarious and exhausting all at the same time, and so you'll hear all our attempts at keeping her safe and entertained over the last week.
This week I've been in really, really bad pain. I've had a very frank conversation with Holly about the NHS texts that she's been getting and not telling me about. But first it's a good job that this is purely audio and you can't see me at the moment because this was the week I decided to bite the bullet and let Holly cut my hair. Brave or stupid? You decide.
[Music] Are you ready?
HOLLY -Yeah, come and sit down.
KATE -Where am I sitting?
HOLLY -On this chair here, look.
KATE -Right. Have you watched a video?
KATE -Why does that not sound convincing?
HOLLY -Oh, I've brought two pairs of scissors and not a pair of scissors and a brush.
KATE -Oh, I thought that was like a trick thing, like you were doing two at once.
HOLLY -Oh yeah, I could try it.
KATE -Okay. Oh wow, it is long.
HOLLY -I'm going to do like a trial one and then I'll cut it still long.
KATE -What do you mean a trial one; how can you do a trial cut?
HOLLY -Just don't you worry yourself.
KATE -No, you're not meant to cut it straight; you're meant to cut into it.
HOLLY -Oh my god, I can't do this if you're going to, like, interrupt every two minutes.
KATE -Making a little pile of hair.
HOLLY -The birds will love that, won't they?
HOLLY -Because don't they like hair for nests?
KATE -I don't know. Is that a thing?
KATE -Oh, you're right by my eyes. That was actually in my eye! Oh my god.
HOLLY -Oh my god, don't flinch.
KATE -Well, don't put it in my eye! You actually put the scissors in my eye then.
HOLLY -I'm going to give you the worst fringe ever if you don't be quiet.
KATE -Oh the power you have over me right now.
KATE -Oh my god, how short are you cutting it?
HOLLY -I'm cutting it like, you know how you used to have your hair in Year 3?
HOLLY -I'm cutting it that short. Put it this way you won't need another cut for a while.
KATE -You are taking much too much enjoyment out of this.
HOLLY -It is quite fun.
KATE -Can I do yours?
HOLLY -No, I don't have a fringe. I grew it out.
KATE -You could; I could cut one back in for you.
HOLLY -No! You really love your hair though, don't you?
HOLLY -Do you remember what happened when you went to Jamaica on a trip? Were you building a school or something? I don't know.
KATE -We were running a kids club.
HOLLY -Yeah, in Jamaica, and what were you most upset about?
KATE -Well, that I didn't take my hair straighteners with me.
HOLLY -Yeah, and then what happened?
KATE -And then I couldn't have hair straighteners.
HOLLY -And then didn't you, like…?
KATE -Well, I prayed for hair straighteners.
HOLLY -And they appeared.
KATE -And they appeared under my pillow. [Laughter]
HOLLY -That's a true story.
KATE -God words in super mysterious ways.
HOLLY -Yeah, sure.
KATE -He really cared about me and my hair.
HOLLY -Yeah, I mean it would be nice if he cared about other things that you asked for.
KATE -Yeah, well, he came through on that one.
HOLLY -Woo, there goes my gin and tonic. Probably shouldn't be drinking that at the same time!
HOLLY -[Music] Right, have a look, what do you think?
KATE -Oh wow. I mean, it goes up here. No, don't just cut it because you'll cut it shorter and shorter.
HOLLY -Oh yeah.
KATE -Yeah, that bit's too short.
HOLLY -Well, it's not too short; it just looks like there's a bit missing.
KATE -Yeah, because you cut it! Oh no, Scout's coming.
HOLLY -Hi Scout.
KATE -Hi Scout, mummy's just cutting my hair.
HOLLY -Right, now don't move.
SCOUT -Can I cut your hair?
HOLLY -Okay, why don't you let Scout cut your hair?
SCOUT -Can I do it now? Can I do it now? Hold my carrot.
HOLLY -Hold my carrot.
KATE -Hold my carrot. Right, let's go.
HOLLY -Woah! [Laughter]
KATE -What's happening? Just a tiny bit, bub. A tiny bit, you can do this tiny little bit here.
KATE -Okay, there. Ready? Squeeze.
HOLLY -Wow, well done!
KATE -Good job, thank you.
HOLLY -Good job.
KATE -Now, that's the only time you're ever allowed to cut somebody's hair. Okay? Well done. Jeepers creepers. We put Scout in front of CBeebies to try and stop her thinking that cutting somebody's hair was okay. And obviously that did not last long enough, so.
HOLLY -Yeah, she's furious Waffle wasn't on.
KATE -Yeah. [Singing] Waffle doggie.
HOLLY -Every parent will be nodding at that theme tune.
KATE -Yeah, she loves it. Thank goodness for CBeebies, I swear.
HOLLY -I know. Didn't I say the other day that if I meet the controller again I'm going to give her a hug and thank her for saving…?
KATE -Yeah, for getting us through this whole time. Because with CBeebies you feel like they're learning something.
HOLLY -Well, she's at school, isn't she?
KATE -Yeah, basically just sit her in front of that for ten hours a day. What's that?
KATE -Did you cut that off my hair?
HOLLY -Oh, I didn't even remember. That's where that piece has gone.
SCOUT -It's my hair.
KATE -Oh my god.
HOLLY -Doesn't she look great, Scout?
KATE -Mummy cut that off my hair.
HOLLY -I don't remember doing that. I mean, how many inches is that?
KATE -That's like six inches of hair come off. Where did that even come from?
HOLLY -I just don't even know. That's so weird.
KATE -I've never had a hairdresser say that to me before.
HOLLY -[Laughs] Let's have a look? Okay, I've really got to stop because I'm going to start making it look worse.
KATE -Yeah, please don't, please.
HOLLY -I think that looks really good.
KATE -Okay, good.
HOLLY -Send your mum and dad a picture because they're always on about you about your fringe.
KATE -Yeah, I'll say fringe finally cut.
HOLLYYou only needed a bit of vodka and coke and you were…
KATE -And I was confident to let you go for it.
KATE -Just to let everyone know that it is half five in the evening, even though Scout is awake.
HOLLY -We don't really drink.
KATE -We barely drink anything, but today is a special day. I don't know why.
HOLLY -Easter, Easter Tuesday.
KATE -Yeah, and that's fine. [Music]
I'm lying in bed at the moment because I feel pretty rubbish. My EDS is often made worse around my period time because it's all about laxity of joints and when your period hormones are around your joints get even looser. That's like the idiot's version that I understand. I'm sure there's a much more knowledgeable medical person who can explain that better, but it just means that joints overstretch and hurt more and all of that kind of stuff.
I've also got, as well as having all my various things, I've also got quite bad endometriosis, and that makes my periods really quite bad anyway. I've had four major surgeries for it; the last one was really quite big. It helped it for a while, for a good few years, but in the last year or so things have been getting worse and worse again and I've got two very large fibroids in there as well now. I've been seeing a consultant and the consultant has said that he wants to put me through the menopause and then probably do a hysterectomy quite soon because it's the only way to solve the problems in all honesty. It's all like everything has now kind of stopped because of what's going on. And I absolutely get it that life has to stop, but I got a tweet from Jenny, @jennycole04, who said: I want to start by saying I understand why we can't access these things at the moment, however I wondered how disabled and chronically ill friends are coping with not having access to usual medical appointments, treatments etc. and conditions symptoms worsening.
And I totally get it because I should have had an extensive MRI about two weeks ago, and obviously couldn't go to that. In fact I didn't even get a notice to say it was cancelled; I just assumed it was cancelled and also that I wouldn't be able to go. So, part of me is now worried that I will have been taken off the system, because that's often what they do in hospitals if you miss important appointments like that. But also that was just going to look at how extensive the surgery was going to need to be and how difficult the surgery was going to need to be. Because straight after that I was meant to see my consultant, and obviously that's not going to happen. And he was also going to start me on the menopause treatment at some point this month, which it's a blessing in disguise that it's not happening right now because for me going through the menopause whilst in isolation I think would be a recipe for utter disaster. But who knows? But I really did want to get the treatment started because I really need it.
I'm just wondering how many people are being affected by this, the fact that we can't have our usual appointments that keep us going and keep us well. And I think this is going to probably impact a lot of people. I can imagine a lot of people who need routine stuff, routine physiotherapy, routine appointments, medication check-ups, all that kind of stuff. I imagine people who if you break your leg you're still probably going to get seen, that kind of thing. But for disability things, the regular everyday non-urgent stuff it's all just stopped, hasn't it? I don't know if that's affected you, but it's started to affect me now and I'm a bit worried about how long this is going to go on for and therefore how long it's going to be until I can get any resolution. And also how long these fibroids are going to grow for again, and see if it's another five, six months before I see anyone these fibroids are going to be huge. And that's why I was meant to be starting the menopause this month to stop them growing.
And Jenny, I totally agree with you that this is a problem, probably not just for me but for lots of disabled people out there. So, if this is a problem for you get in touch and tell me what you're thinking about it. Email my producer email@example.com.
[Music] Yeah, I'm coming Scout. Right,
HOLLY -Don't sing it.
KATE -Are you ready for this week's instalment of…
HOLLY -Don't sing it.
KATE -[Singing] Isolation issues, issues, issues, issues?
KATE -Why do you hate me so much? It's like…
HOLLY -It's that song.
KATE -It's brilliant.
HOLLY -So bad.
KATE -Right, I've definitely got one this week. Have you got one? Actually, before we go into them, what did I finish yesterday?
HOLLY -The Harry Potter castle.
KATE -I did. It's like my greatest achievement. Are you proud of me?
HOLLY -I am, but…
KATE -And where is it?
HOLLY -You see, I'm now regretting encouraging you to finish it because you're displaying it pride of place in our living room.
KATE -Yes, I am.
HOLLY -And you've even gone round the house and picked up other Harry Potter bits you've got and made some kind of display.
KATE -Yeah, it's great. Right, have you got an issue or shall I kick off?
HOLLY -You kick off. I have an issue but yeah, you kick off first.
KATE -Okay. So, my issue this week was that obviously this weekend has been Easter weekend, and what did you decide would be a really great idea to do with Scout in terms of how much Easter chocolate she could eat?
HOLLY -I let her, what's it called, self…
HOLLY -Self-regulate, which I think was a good idea. I still stand by that. There wasn't any kind of arguments about it.
KATE -No, there wasn't any argument because she ate nothing but chocolate all day.
HOLLY -Oh, it's one day of the year. Please.
KATE -Did she eat anything else?
HOLLY -Oh, maybe a ketchup wrap or something.
KATE -I don't think she even ate that.
HOLLY -I don't know, I've no idea, but it's one day a year.
KATE -And then what was she like on Easter Monday?
HOLLY -She was acting like a toddler with a hangover, wasn't she?
KATE -She absolutely was. It was awful.
HOLLY -But I think we all were. It was a really weird day. It's like you build up to something in this isolation, and Easter happened to be it, and then Easter was over and then on Monday it was like oh, now what. We all felt quite down.
HOLLY -We couldn't really explain it. The weather was a bit rubbish. We didn't really move from the living room I don't think.
KATE -Go on then, what's your issue with me?
HOLLY -So, Easter Monday morning everyone was a bit down and I said to you, "You know what, Kate, not feeling great today".
KATE -Oh, I know what you're going to say, I know what you're going to say.
HOLLY -And, "Be quiet, and Scout's driving me crazy, so I'm going to need a bit of help". So, what did you do? You went and posted on our WhatsApp group: does anyone have a pressure washer. And then you decided to pressure wash not only our front door but the steps around it. You turned it on and Scout and I were watching, and this kind of like pin prick of water came out of it. And we were like, well I think I said to you at the time, "Kate, stop it, you're not going to be able to do this because you're going to make marks on our pavement" but you decided to carry on.
KATE -In my defence I've watched a lot of people on Instagram getting pressure washers and pressure washing their various parts of their house and it looks amazing. The before and afters are like super impressive. However the person who brought the pressure washer over, apparently it's a really small pressure washer. I've never used a pressure washer before, I've never even seen one, so I didn't know what size it was meant to be.
HOLLY -But the thing was - this is getting boring now - but it wasn't a job on our list. It was just like you plucked it out of nowhere and thought, oh I just want to have a go with a pressure washer because it looks cool.
KATE -No, and I did apologise for the madness, and then I did come in and make you some banana cake.
HOLLY -Yeah, I know, which was good.
KATE -So, you know. Are you finding you're missing any mundane things now that we're so kind of far into this?
HOLLY -Yeah. I'm missing stuff I kind of didn't really enjoy in the real world before, like where you go swimming early in the morning a lot to keep fit.
KATE -LOL early in the morning.
HOLLY -Yeah, I mean 8:30, nine o'clock.
KATE -Nine o'clock.
HOLLY -I always have to push myself to do it and don't really enjoy it, but feel good afterwards. I'd kill to be able to go swimming now, or even for a really good walk, which obviously I'm not allowed to do. I miss coffee shops. I miss coffee.
KATE -Oh, I miss coffee shops so much.
HOLLY -A really nice coffee. And we've got loads of great independent ones where we live, and I could just…I just miss it.
KATE -I just miss sitting in the coffee shop with a laptop, cracking on with work.
KATE -And drinking a coffee.
HOLLY -Because there was work then.
KATE -[Laughs] Yeah, do you remember those days?
KATE -Proper work to do.
HOLLY -Now I open my laptop and are like, oh just go on Amazon and buy something else that I don't need.
KATE -I miss going to the cinema.
HOLLY -Oh yeah, going to the cinema is great. That's not a mundane thing, that's like a treat.
KATE -No, it's a total treat. Well, weirdly I just miss going to a supermarket and choosing what I want for myself.
HOLLY -Yeah, going into friends' houses; driving somewhere.
KATE -Driving somewhere, yeah.
HOLLY -I haven't driven a car in…
KATE -Five weeks?
HOLLY -Four or five weeks.
KATE -I might have to take your licence off you.
HOLLY -[Laughs] Do you think I'll remember how to start the car?
KATE -No. [Music] Scout's been watching quite a lot of telly, as we mentioned, and we try to, we're being responsible parents obviously.
HOLLY -Yeah, and CBeebies is the first thing that goes on because not only is it educational, it's got no adverts. But anyway there was something on CBeebies that she didn't want to watch today so I just flicked onto another channel, obviously it had adverts, and we were in the garden and she came out and she said, "Mummy, can I have a Baby Annabel and each sold separately?" [Laughter] And I was like, oh god.
KATE -Each sold separately.
HOLLY -Yes, I think it's time we didn't watch any more telly. She woke me up this morning by pulling my hair. She's got to stop sleeping in our bed, but it just feels so mean to be like, yeah it's this awful time of your life and you're really traumatised because you haven't seen your friends, you haven't gone swimming and you haven't gone to preschool, and now you can't sleep in our bed anymore.
KATE -Yeah, now and you're anxious and it's horrible, but off you pop.
HOLLY -It just wouldn't be fair.
KATE -No. It does feel like she's going through a bit of regression at the moment, which is totally normal and understandable. We've had quite a few cry-y outbursts, which is very unlike her. And then yesterday she wet herself for the first time in…
HOLLY -Ever, since training.
KATE -Yeah, literally ever. That's never happened. She potty trained in three or four days, and then that was it.
HOLLY -Yeah, it was really weird. I think she was a bit shocked, but she admitted that she'd been needing to go since she got up and she just hadn't. She wants to eat things like finger foods more, doesn't she?
KATE -Yeah. It's just hard because you want to make sure you're doing the right thing by your kid, and then to watch them have a bit of regression is difficult, isn't it?
KATE -So, it does feel like saying to her that she can't sleep in our bed when that's all she wants to do at night time.
HOLLY -But everything is a phase. Remember we've said that since the day she was born: everything is a phase, and it will be back to normal soon.
KATE -[Music] Right, Holly, I have something that I need to talk to you about. So, one of our listeners emailed in and said that they had got a text from the government. You know how you get these texts?
HOLLY -Yeah, I've had quite a few.
KATE -Yeah, and that hers have said that they've advised that you get a hospital bag ready.
HOLLY -Okay yeah, I've had that text, yeah.
KATE -Right, so where's your hospital bag?
HOLLY -Oh, it would feel a bit like tempting fate to pack a hospital bag. I don't know. They say the same when you're waiting for a kidney on the transplant list, and I never had a bag ready then.
HOLLY -It just felt weird. And I presumed that if I did need to go to hospital I'd be pretty seriously ill and I can't imagine I'm going to need much, like hair straighteners and, you know.
KATE -Yeah, you probably won't need your hair straighteners.
HOLLY -But that kind of thing, or make-up or, you know.
KATE -I'm not suggesting you put hair straighteners and make-up in. Who are you? You don't straighten your hair and you don't wear that much make-up.
HOLLY -You never know.
KATE -What I'm talking about is have some clean pants and have some pyjamas.
HOLLY -But even that, my experience in hospital is that I've worn a gown and that's it the whole time.
KATE -No, that's not true, because when you start to feel a bit better you always want to have cleaner clothes to put on, you'll want a book to read, and you won't have anyone that can bring it in.
HOLLY -I don't think I'd be well enough to do that. Can you not leave a bag on reception?
KATE -No, because I won't be allowed anywhere near the hospital. And they won't have time to start flipping chauffeuring your bags around the hospital because you couldn't be arsed to pack a bag. They'll say tough shoots, won't they?
HOLLY -I mean, the phone charger would be useful.
KATE -Yeah, exactly.
HOLLY -I suppose I hadn't really thought about it seriously.
KATE -Well, why not? The NHS aren't sending you these texts out of the goodness of their heart; they're saying this is good advice.
HOLLY -Actually I got one to tell me to do some nice puzzles the other day.
KATE -You got a text telling you to do puzzles?
HOLLY -Yeah it was. It was, like have a nice day, do a puzzle.
KATE -From the NHS?
KATE -Oh that's cute.
HOLLY -It was. There's a few like that, like check in with friends today.
KATE -Ah. Well, that's cute, but the bag one is quite important.
HOLLY -You've actually…I'm starting to imagine myself and them going, like say if I did have the virus and them going, okay well you're a lot better, but because you've had a transplant you can't go home for another week, and me being like, "Can I borrow a book?" "No, there are no books here".
HOLLY -"Can I charge my phone?" Okay, I'll pack a bag.
KATE -Oh well done. Were you actually or is that just for show?
HOLLY -No, I actually, I think it was when you said a book; we read all the time, I can't imagine not having a book on me ever.
KATE -And also imagine if you just got like a random infection, or [laughingly] do you remember when you broke both your ankles, imagine if you broke both your ankles again.
HOLLY -Did you say that while you laughed?
KATE -Yes, because it was so ridiculous; you just tripped over your own foot and went down.
HOLLY -No, I didn't. I fell in a hole.
KATE -Oh yeah, sorry, you fell down a pothole.
HOLLY -A hole in the middle of the road.
KATE -Yeah, so you fell over, broke one ankle…
HOLLY -Tried to get back up.
KATE -…tried to get back up, fell over again and broke the other one. [Laughs]
KATE -We should say that's because you've got renal bone disease, which means your bones are a bit…
HOLLY -A bit rubbish.
KATE -Anyway, so the upshot of all of this is you're actually going to pack a bag.
HOLLY -Yeah, I'm actually going to pack a bag.
KATE -Well done. I think it was Mel who sent that in. Thanks Mel, that's actually been very helpful.
HOLLY -Thanks Mel.
KATE -[Music] I don't know if you can hear Milo purring. Milo, are you going to let me record without you here? No, can't get him off me, okay sorry, so we'll just do this with Milo purring.
So, loads of you guys have been sending lots of emails to let me know how you're coping through this weird time. Thank you so much, it means such a lot that you're reaching out and telling me that I'm not on my own with this. But one particularly touching email that I read this week was from Chloe. Chloe is a similar age to me and has two daughters, a seven year old and a 16 month old. Oh my gosh, Chloe, you are already amazing and I don't know how you're doing it because it's hard enough with one. Chloe has ankylosing spondylitis, or AS, fibromyalgia, a degenerative disc disease and chronic fatigue. She takes a lot of medications, including a drug that suppresses her immune system for the AS. For those of you who don't know, AS is a form of inflammatory arthritis, like an autoimmune disease. Chloe also has complex post-traumatic stress disorder leading to anxiety and depression, same as me - good work. Like a lot of us, Chloe says she's found her mental health issues have worsened when she started isolating, and she actually withdrew from society two weeks before the announcement from Boris. So, Chloe you've pretty much been in isolation a very similar time as us. I am really grateful that you have emailed in, and I'm glad you're enjoying the podcast because I'm glad that it's making you feel less alone and you writing to me has made me feel less alone as well. So, I really do appreciate it, and I hope that kind of chatting about these mental health things will make it a bit easier for all of us to know that we're in a boat together; we're not sailing this ship by ourselves.
I've had a bit of a dip yesterday, which was Easter Monday. I feel like Easter was something to look forward to, even though the days weren't going to be really that much different, but I sort of knew that we'd be having chocolate and it was a special day and we were going to go and do an Easter egg hunt on the road and all of that kind of stuff, and it felt like something to look forward to. And then all of a sudden there was nothing to look forward other than more days that felt the same. So, yeah I had a bit of a dip. And Holly had a dip actually yesterday as well; she felt a bit rubbish. And Scout was not happy at all yesterday either; she was probably picking up on our moods and she was probably feeling the same in terms of well, now I want to go back to preschool again. So, yeah I think mental health wise it's really important to have something to look forward to.
When I spoke to my mum she gave me the suggestion of setting maybe a weekend, like a theme weekend, for a couple of weekends' time where we can have a space theme weekend or something and we could do some space craft with Scout and make some space themed cakes and all of that kind of stuff, just to make the days feel a bit different. So, I think that's what we might do, either next weekend or the weekend after, and just tell Scout that it's going to be a special space weekend and only watch space themed movies and stuff like that, just to have something to look forward to. Because it's really difficult, isn't it, because it's like an indeterminate amount of time that we don't really know when it's all going to end, and I find that really difficult. Like if I knew right, we've only got three more weeks to do or…
Obviously in our countdown we've got, how long have we got left, this is week five so that should be seven weeks left, but it really won't be. I don't believe it will be seven weeks, which is why I'm not counting down seven weeks. So, yeah it's that indeterminate thing of oh, I want to book a holiday, or I want to decide when I'm going to go and see my parents again or whatever, and not having something to look forward to I think is really difficult. So, we're going to have to make up some things to look forward to in this time. Maybe that will help us, and maybe that could help you as well, Chloe, or anyone else who's listening to it. I don't know. Give it a thought. And if you have any ideas for themes that we could do let me know, because I think space could be a cool one because Scout is quite interested in planets, so I might try that.
I also received an email from Evie who's been enjoying Ouch since last year despite not having a disability herself. Great, I love that, because so many people assume they can only listen to Ouch or enjoy Ouch if they're disabled themselves, but everybody is welcome. We've got so much more that's in common with us than divides us and I think it's great for people who don't have a disability to actually get involved and listen and understand a bit more. So, brilliant, thank you, Evie. I really love it when all kinds of people listen to the podcast. I mean, to be fair, I just love it when anyone listens, so thank you to anybody who is listening to this.
But Evie sent me an email and she gave me some great tips for keeping Scout entertained, and one of those was getting Scout to put on an art gallery for us. Apparently she used to do it with her brother and put drawings in different parts of the house, then Scout can take us round, show us, and we can offer to buy our favourites. Oh my gosh, I just so love this idea; I just love the idea of Scout taking us around the house and showing us her different pieces of art. I'm definitely going to do this with Scout this week. Holly and Scout will do it and they can take me round, or me and Scout will do it and we'll take Holly round. That is just such a good idea, I love it. Definitely going to do this. Thank you so much, Evie, I love the idea.
If you've got anything, any ideas for me to do with Scout, or any mental health tips, then please let me know. You can tweet me about it @katiekatetweets, or email my producer Amy Elizabeth, firstname.lastname@example.org. She passes them all on and I love reading it.
[Music] I'm going to leave you with some advice from the person who has kept me smiling all week, my daughter Scout:
SCOUT -Stay home, stay safe and eats lots of chocolate.