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Being disabled in the third lockdown

As Lockdown returns so does our Isolation Diaries podcast

Kate Monaghan has Ehlers-Danlos syndrome and endometriosis, whilst her wife Holly is the recipient of a kidney transplant and has been shielding since the start of the pandemic.

Last spring Kate documented the personal reality of managing lockdown with the added complexity of being disabled, having a high risk family member and an energetic three-year-old daughter.

This winter lockdown threatens to be even harder and as Kate's lockdown household grows we share the highs, lows and everything in-between!

Produced by Amy Elizabeth.

Subscribe to the podcast on 麻豆约拍 Sounds or say "Ask the 麻豆约拍 for Ouch" to your smart speaker.

If you want to message Kate or ask her a question, email amy.elizabeth@bbc.co.uk

Release date:

Available now

30 minutes

Transcript

This is the full transcript of Ouch 鈥 the cabin fever Isolation Diaries podcast as broadcast on 22nd听January 2021 and presented by Kate Monaghan.听听

kate - Well hello, and welcome back to Isolation Diaries. It has been a little while hasn鈥檛 it? For those of you who are new to Isolation Diaries I鈥檓 Kate Monaghan, and this is basically my online diary. Back in March when the world stood still for the first time I carried my recording equipment around in my pocket to record my thoughts while I was shielding with my family. We were shielding because my wife, Holly, is the recipient of a kidney transplant, and so she鈥檚 on medication that basically stops her immune system. So she鈥檚 in the extremely clinically vulnerable category, which meant that we had to shield and follow the rules very, very strictly, and it wasn鈥檛 easy

So, if you鈥檙e a new listener, welcome along, it鈥檚 great to have you here, and if you stayed with me during series one, well you probably now know me better than some of my very best friends. The one thing that I always promise with this podcast is that I will be super honest, as a disabled wife and mum with EDS, which is听Ehlers-Danlos syndrome, a kind of chronic pain, joints thing. I鈥檝e got endometriosis, I鈥檝e got fibroids, I鈥檝e got all sorts of stuff going on, including joyful mental health issues as well. So doing that all in lockdown is far from glamorous, as I鈥檓 sure you can imagine, but I always keep it real. In fact sometimes it gets a bit too real, which I鈥檓 not going to apologise for because I鈥檓 warning you about that now

Last time I spoke to you in the summer my family consisted of my wife, Holly, our daughter, Scout, and our four cats, Milo, Tiger, Felix and Ralphie. In fact you can hear Milo now having a lovely time on my lap, but that has now all changed.

[music]

KATE - Hey baby.

HOLLY - Okay.

KATE - Hi.

HOLLY - Hi. What are you doing?

KATE - Well, it鈥檚 back.

HOLLY - What鈥檚 back?

KATE - The podcast.

HOLLY - Yay! [laughter]

kate - Is that a real yay?

HOLLY - Yeah. Lockdown鈥 Are we calling it lockdown two or lockdown three?

KATE - I think it鈥檚 lockdown three now because 2.0 was in November, although it was brief and not that difficult.

HOLLY - Yeah, I don鈥檛 feel like that was a really very鈥 Yeah, not much of a thing. But no, since we last had the podcast we鈥檝e鈥 We鈥檝e doubled the amount鈥 Did you just鈥?

kate - I just farted, sorry. [laughter]

HOLLY - That鈥檚 really nice.

KATIE - Classic.

HOLLY - It is classic. We鈥檝e doubled the amount of children we have. We鈥檝e doubled the amount of people in this house. What else has changed?

KATE - Scout鈥檚 been at school.

HOLLY - Yeah, Scout started school, did a term and is now not at school. And鈥

KATE - Yeah. So, like, we need to explain all these things. Okay, so we鈥檝e doubled our children, so we鈥檝e adopted a beautiful daughter.

HOLLY - Yeah, so we鈥檝e got two little girls now. Our youngest is鈥 She鈥檚 20 months.

KATE - Who we often refer to as Little G.

HOLLY - Yeah. Is she 21 months?

KATE - No, she鈥檚 20 months. She鈥檚 two in April.

HOLLY - No, I think鈥

KATE - Yeah, so February, March鈥 Yeah, so鈥

HOLLY - Okay, whatever. She鈥檚 21 months.

KATE - She鈥檚 two in April.

HOLLY - Yeah.

KATE - And she鈥檚 beautiful and gorgeous and we鈥檙e all absolutely besotted with her I think, Scout included. Finally.

HOLLY - Finally. That鈥檚 another story.

KATE - Yeah. And your brother and his girlfriend moved in.

HOLLY - Yeah, so they moved in, as due to lockdown they had to rent out their flat and they鈥檙e also trying to buy a house, so it made sense for them to come and live in the top floor of our house.

KATE - Well, they鈥檝e been living here since October last year.

HOLLY - Yeah.

KATE - Quite a while actually.

HOLLY - Yeah, and it鈥檚 good. They鈥檙e great cooks and the kids adore them.

KATE - Yeah, they鈥檙e a bit younger than us. The kids think they鈥檙e really fun.

HOLLY - And cool.

KATE - Yeah, they鈥檙e, like, early 20s. Mid 20s actually, let鈥檚 be fair.

HOLLY - I think Will鈥檚 almost 27, Kate.

KATE - Is he?

HOLLY - Yes. [laughs]

KATE - Wow, okay. Early 20s, that鈥檚 early 20s to me.

HOLLY - Yeah. God, yeah you鈥檙e right actually.

KATE - Okay, mid 20s. So Will and Louise now live with us until their new house is bought, which is going to be a few months.

HOLLY - So there鈥檚 six of us here now.

KATE - Yeah.

HOLLY - And sometimes it鈥檚 crowded, sometimes it鈥檚 not. Oh, we lost a cat, because you know we had four cats, that was really sad, a few months ago.

KATE - Oh, yeah.

HOLLY - We were in Cornwall where my dad lives, seeing him, and we got a call saying that one of our cats was dead in the garden because he鈥檇 been run over and that was awful.

KATE - Yeah, he鈥檇 managed to get himself to the garden. Ralphie.

HOLLY - Little Ralf. He wasn鈥檛 the brightest spark was he, but鈥

KATE - No, but鈥

HOLLY - He gave, like, proper hugs. He put his paws round your neck.

KATE - Yeah, round your neck. When you picked him up he鈥檇 put his paws round your neck.

HOLLY - Like a baby.

kate - And then he鈥檇 just hold on and you鈥檇, like, cuddle him.

HOLLY - Oh, I miss him so much. But we鈥檝e got the other three.

KATE - We鈥檝e still got three cats. So yeah, we鈥檝e added three humans.

HOLLY - Minus a cat.

kate - We鈥檝e taken away one cat. Equals鈥

HOLLY - Lockdown 3.0. [laughter]

KATE - Yeah. Wow.

HOLLY - So here we are.

KATE - So here we are. So babes, how is this lockdown feeling for you?

HOLLY - Er鈥 pretty crap actually.

KATE - Yeah, so better or worse than lockdown 1.0?

HOLLY - Worse. I mean, it鈥檚 dark at, like, three o鈥檆lock and it gets light at about nine o鈥檆lock in the morning. I think鈥 I mean, I can deal with all that, the hardest thing has been, so Scout started school in September, absolutely loved it. She didn鈥檛 really get on with preschool much, I think she was quite bored.

KATE - No, she was really happy to go back to preschool. She did a week and then she was like, ah鈥

HOLLY - Yeah, I鈥檓 done now.

KATE - I鈥檓 done. I don鈥檛 want to go back.

HOLLY - Whereas school has challenged her.

KATE - Well, we ended up not sending her for the last month of preschool, so we were like, oh, is she going to go to school? How鈥檚 it going to go? And she went and she loved it.

holly - From day one she has been just such a fan of everything to do with school hasn鈥檛 she?

KATE - Yeah.

HOLLY - She gets to do, like, dance and yoga and rugby and she鈥檚 got all her little friends and it鈥檚 a really, really nice little local school. And we walk in the morning. We had a really nice routine of walking all together to get her and everything. And so we had a lovely term, all prepared for her to go back, and鈥

KATE - Well, then Christmas happened and then the new variant happened.

HOLLY - Well actually we were probably not going to send her for the first two weeks anyway.

KATE - Well we were thinking about not sending her for the first two weeks and we were, like, oh actually maybe we will send her. Then before school started we were sort of having debates of like, oh should we send her on Monday? Luckily on that Monday鈥

HOLLY - And then she had an inset day, so we were, like, oh, you know, let鈥檚 wait and see what the government do. They didn鈥檛 shut schools so we鈥檇 literally, like, that afternoon at about, I don鈥檛 know, two o鈥檆lock, made the decision that she was going to go back to school the next day. So cases in Yorkshire were low compared to London.

HOLLY - Yeah.

KATE - And it鈥檚 good for our mental health.

HOLLY - And her mental health. She was desperate to go back. We had a lovely two week Christmas holiday.

KATE - So we decided, we were, like, okay, she鈥檚 going to go back to school. 鈥淩ight, so Scout, you鈥檙e going to go back to school, it鈥檚 great. You鈥檙e going to go back tomorrow.鈥 And then literally five minutes after telling her our phones pinged and it was, like, press conference happening at six o鈥檆lock this evening. And then we were like, 鈥淪cout, you might be going back to school.鈥 And then all the news started leaking and we said, 鈥淥h, we鈥檙e not going to be able to tell you until you鈥檝e been in bed and you鈥檝e gone to sleep. We won鈥檛 be able to tell you till the morning,鈥 because obviously the press conference that evening wasn鈥檛 till eight o鈥檆lock. God, it was so unsettling wasn鈥檛 it?

HOLLY - Yeah, that was two and a half weeks ago I think?

KATE - Two weeks ago. Two weeks today.

HOLLY - And so Scout鈥檚 school jumped into action and started, you know, said, 鈥淩ight, we鈥檙e going to do home schooling and we鈥檙e going to do this online register,鈥 so in the morning all her classmates got on Zoom.

kate - Well no, that鈥檚 not what happened. It鈥檚 not.

HOLLY - Why don鈥檛 you just skip? Just skip the boring bits.

KATE - Because it鈥檚 more interesting.

HOLLY - Nothing happened.

KATE - Well, the next day it was all just like, everyone was scrambling all over the place. The school did their best but there was no online stuff, we were just, like, 鈥淥kay, you鈥檙e not going to school, it鈥檚 fine, you鈥檙e just going to stay home with Mummy and Mumma,鈥 and she was, like, okay with it and then came home schooling, which the teacher started sending work at the end of that week I think?

HOLLY - Yeah. Oh, I think it was the day after. It was, like, midweek. But, you know, it was fun for five minutes.

KATE - Yeah, she鈥檚 really not into home schooling and she鈥檚 finding the register quite tough at the moment isn鈥檛 she? She鈥檚 getting a bit鈥

HOLLY - Yeah, I think it鈥檚鈥 You know, she鈥檚 got 30 kids in her class, so it鈥檚 30 four and five year olds, obviously some of them are in school so she can see them. Everyone鈥檚 scrambling to say hello and鈥

KATE - You can鈥檛 really hear anything.

HOLLY - No, it鈥檚 actually really鈥 A really stressful start to the morning. And they do emphasise that they鈥檙e like, you know, you must be dressed.

KATE - Yeah. You have to be in appropriate clothes at 9:20 to register.

HOLLY - You know, which fair enough, but it just puts extra pressure on. And so we鈥檙e not loving that. But we鈥檙e just鈥 we鈥檙e just trying to get by every day. We鈥檙e not teachers.

[music]

KATE - Who鈥檚 come downstairs? Oh it鈥檚 okay, it鈥檚 Louise.

HOLLY - Oh.

KATE - We鈥檙e always worried that it might be Scout trying to escape from her bedroom.

HOLLY - Yeah.

KATE - Because it鈥檚 night time, we鈥檝e just put her to bed and she鈥檚 forever trying to get out and get into our bed.

HOLLY - Yeah, successfully, 99% of the time.

KATE - Yeah. What else is going on? My grandma鈥檚 dying, so that鈥檚 not fun, and in a pandemic that is even worse. She鈥檚 very poorly and we got told on Saturday that she has been moved to palliative care. She鈥檚 very old so, you know, she鈥檚 had a good life, but鈥 It鈥檚 not COVID, it is kind of just old age really, but yeah, I don鈥檛 think she鈥檚 going to last much longer and we were quite close, me and my grandma, and I haven鈥檛 been able to see her. I remember saying to you, do you remember, last year I got upset one day near the beginning of the pandemic, maybe like a few weeks in, I said, 鈥淚鈥檓 worried I鈥檒l never see my grandma again.鈥

HOLLY - Yeah, yeah.

KATE - And what did you say?

HOLLY - 鈥淵es, you will鈥? I don鈥檛 know.

KATE - Yeah, you were like, 鈥淒on鈥檛 be ridiculous, of course you will.鈥

HOLLY - Oh, your grandma is the most amazing woman, she鈥檚, like, so frail and so old she鈥檚, like, 96.

KATe - 96, yes.

HOLLY - And she鈥檚 had so many, like, scrapes with death in the past ten years.

KATE - Near death experiences. Yeah, because one of my friends, right, I鈥檒l tell you this story, one of my friends, my best friend in fact, she went into labour鈥

HOLLY - I thought I was your best friend. [laughter]

kate - My best friend who I鈥檓 not married to.

KATE - She went into labour one night and she phoned me and said, 鈥淐an you take me to the hospital?鈥 So I was like, 鈥淵eah, yeah, yeah, I鈥檒l take you to the hospital,鈥 but at this point my grandma was really poorly and I was saying to her, 鈥淚 don鈥檛 think she鈥檚 going to make it through the night,鈥 and as a joke I sort of said, 鈥淵ou should name your baby after her, because she鈥檚 going to die.鈥 And lo and behold she did. [laughs] She was like, 鈥淎ctually, I really like that name.鈥 So yeah, and she always jokes with me, she鈥檚 always like, 鈥淪o, how鈥檚 that grandma who I named my child after who was supposed to die?鈥 And I was like, 鈥淵eah, still alive.鈥

HOLLY - Have you told her?

KATE - Yeah, I have. Yeah, of course I have. But yeah, that鈥檚 how bounce back-able my grandma is.

HOLLY - Yeah, she鈥檚 amazing.

KATE - But I don鈥檛 think there is any bouncing back from this one unfortunately.

HOLLY - You never know.

KATE - Well, the doctors have made it fairly clear. So yeah. Anyway, I鈥檇 really like to see her, I want to be with my parents and it鈥檚 really awful.

HOLLY - Oh course, yeah. It feels like a time where families should be pulling together and being together and supporting each other, yet it鈥檚 impossible.

KATE - Also, I have finally got surgery scheduled which I鈥檓 very excited about. As long time listeners may know I鈥檝e been waiting for a hysterectomy for a long time, over a year now, because I鈥檝e got a really large fibroid in my womb, and my womb has served me very ill throughout my life. There is nothing鈥 No good has come from this womb has it?

HOLLY - No.

KATE - Literally there鈥檚 been no point to it. It鈥檚 borne no children, it has just caused pain and anguish. I鈥檝e had really bad endometriosis, this is probably an endometriosis-y thing in my womb, they鈥檙e not quite sure, fibroid or adenomyosis or something. The surgeon wants to just get it out so he鈥檚 scheduled surgery鈥 you know, as soon as ops came back online he was, like, 鈥淟et鈥檚 get you in and done.鈥 So in two weeks, hopefully, it will be done. So I鈥檓 very excited about that, to finally get it out. So, we鈥檒l be navigating surgery in a pandemic.

HOLLY - Yeah.

KATE - How do you feel about that, Hol?

HOLLY - Not great.

KATE - Why?

HOLLY - Well, I think it鈥檚 a risk having it with鈥 Oh, hi Felix. With COVID around, but you really need the surgery so we鈥檝e been waiting for it for a long time, so it鈥檚 got to happen and we鈥檒l make it work somehow. We always do.

kate - It鈥檒l be really weird because you and I have been together through quite a lot of surgeries haven鈥檛 we? And we have certain coping mechanisms and most of those coping mechanisms involve each other.

HOLLY - Yeah, yeah, like, I mean we鈥檇 been together about nine months and you had major surgery at UCL and鈥

KATE - I had my ovary removed. Part of my bowel shaven off.

HOLLY - Oh, that鈥檚 not good. All this stuff, but yeah, we were together all through that really.

KATE - Yeah. Oh, I do have happy memories though of us lying in hospital watching 鈥楪rey鈥檚 Anatomy鈥.

HOLLY - Yeah.

KATE - And you won鈥檛 be able to do that with me now.

HOLLY - No, I know.

KATE - Because that鈥檚 how we spent our evenings.

HOLLY - I could Zoom in?

KATE - Yeah.

HOLLY - I could do a watching party.

KATE - But you used to get on my bed with me which the nurses always hated, so any time you heard them coming you鈥檇, like, jump onto the seat and then you鈥檇 jump back onto the bed.

HOLLY - That鈥檚 quite a few years ago though when we were both really skinny. [laughs]

kate - I don鈥檛 think we could do it.

HOLLY - I don鈥檛 think we鈥檇 fit on a single bed.

KATE - Not after lockdown weight.

HOLLY - No. King size barely takes us.

KATE - But we got fat and happy, it鈥檚 fine, when we got together. Oh dear.

HOLLY - Not for much longer, me being a runner.

KATE - Yeah. Ah, that鈥檚 the other thing, I can barely recognise you but you鈥檝e started running.

holly - I have. It鈥檚 like my happy thing now. I love it. I did Couch to 5K.

kate - So tell me, when did this start and why did it start?

HOLLY - Oh, it started in November. Why did it? Well, I think I was kind of craving my own space and my own thing, and to get out of the house.

kate - And, you know, obviously with lockdown, you know, there鈥檚 literally nothing else to do.

holly - Yeah, so I started doing Couch to 5K. Thanks Jo Whiley, you got me through it.

KATE - How did Jo Whiley get you through it?

HOLLY - Because she gives you, like, motivation.

KATE - Is she the voice of it?

HOLLY - She鈥檚 the voice.

KATE - Oh, I see.

HOLLY - And so she鈥檚 like, 鈥淐ome on, you can do it!鈥 I was like, 鈥淵es Jo, I can do it.鈥 So I started that and I couldn鈥檛 even run for 90 seconds and I鈥檝e just finished an hour and I can run for half an hour now.

KATE - That is amazing. Because if anyone knows Holly in real life they鈥檒l know she is so far from athletic, it is鈥

HOLLY - Oh, God. I was the kid at school who鈥檇 be, like, faking multiple periods every week to get out of swimming, to get out of PE, to get out of anything. Just go missing last thing, you know, just before the lesson. Oh, I just hated it.

KATE - Yeah, I mean, I鈥檝e never known you run or go to the gym or do鈥

HOLLY - No. I like swimming.

KATE - The most you would do is go swimming with me.

holly - But that鈥檚 more of a nice thing. Mindful.

KATE - We go up and down the pool and then we go into the jacuzzi and that鈥檚 it.

HOLLY - And we just kind of do little breast strokes, you know, that鈥檚 more of a鈥

KATE - Yeah. Lesbian breast stroke. Sorry!

HOLLY - What? Why are you even鈥?

KATE - I鈥檓 sorry. [laughs]

HOLLY - Why is it even funny?

KATE - Sorry.

HOLLY - Why?

KATE - Why? I鈥檒l have to explain it, Holly.

HOLLY - Okay.

KATE - Anyway, yeah. So you were not a runner.

HOLLY - No. But this is鈥

KATE - See, I鈥檓 looking at my wife thinking鈥 Like for Christmas I bought you running gear.

HOLLY - Yeah, I know.

KATE - It was so weird.

HOLLY - Well, I鈥檇 been talking about running for ages and I kept making excuses and I kept saying, 鈥淥h I don鈥檛 have the kit, I don鈥檛 have the鈥︹

KATE - We tried Couch to 5K before and last time you told me you stopped because you had renal bone disease, which meant that your knees were too sore.

HOLLY - Well, I do have鈥 That鈥檚 true, but this time鈥 Anyway, this neighbour came round.

KATE - What鈥檚 renal bone disease, for anyone who doesn鈥檛 know?

HOLLY - Just crappy, achy bones.

KATE - Isn鈥檛 it like sort of weak bones because of your renal disease, your kidney disease?

HOLLY - Yeah, I guess so. It鈥檚 probably something to do with phosphate or something. I don鈥檛 really know.

KATE - I don鈥檛 know.

HOLLY - Anyway, yeah, a neighbour kind of came over with all this, like, brand new gym kit. She was like, 鈥淚鈥檓 not going to use this so do you want it?鈥 And that鈥檚 it.

KATE - Was she trying to tell you something?

HOLLY - Yeah. And that was it, I was like, I鈥檝e no more excuses now, and yeah, it鈥檚 been really good for me, really good, lots of鈥 What鈥檚 that hormone that you get when you鈥檙e鈥?

KATE - Serotonin?

HOLLY - I don鈥檛 know, but you get a really good hormone boost. I鈥檓 really hungry actually.

KATE - You are?

HOLLY - Yeah, I鈥檓 fading a bit. I think we ought to get some dinner.

KATE - Well, let鈥檚 see what our personal chefs downstairs have cooked us this evening.

HOLLY - I can smell good things you see.

KATE - I know, it鈥檚 really good. It鈥檚 like we bath the kids and put them to bed and then we go downstairs and, like, there鈥檚 a meal cooked for us.

HOLLY - And it鈥檚 a really good鈥

KATE - It鈥檚 generally pretty good.

[music]

HOLLY - Scout, where are we at the moment?

SCOUT - At McDonald鈥檚.

kate - Yeah. And what are we sitting in?

SCOUT - Our car. And I鈥檓 eating a Happy Meal.

KATE - You are. This is our weekly treat with just Scout, and our little one, she naps while we do this.

HOLLY - When Will and Louise are at home.

KATE - We go out, we get a drive thru and we collect the Click and Collect shopping at the supermarket, and it鈥檚 good isn鈥檛 it? Nice. And Scout, she sits on鈥 You drive don鈥檛 you? You drive the car?

SCOUT - I do.

KATE - And who orders the food?听听听听听听听听听听听

SCOUT - I do.

KATE - And who pays for the food?

SCOUT - I do.

kate - Yeah.

holly - That鈥檚 right.

kate - That鈥檚 right. And we were just talking about when this crazy lockdown is over what things we鈥檙e going to look forward to doing. Scout, you鈥檙e keen to get back to school aren鈥檛 you?

SCOUT - Yeah.

KATE - What are you excited to do? What鈥檚 your favourite thing to do when we can do whatever we want?

HOLLY - Do you know what I miss?

KATE - Hold on, I鈥檓 asking Scout.

SCOUT - Swimming.

KATE - Swimming. We love going swimming don鈥檛 we?

HOLLY - We do. We love it.

SCOUT - And we like going to the pool but it鈥檚 shut on the virus.

KATE - It is shut to the virus. Where else do you miss going? Do you miss going to your friends鈥 houses for play dates?

scout - I miss going to my friends鈥 houses at play dates and I go to school.

HOLLY - Yeah, you go to school.

SCOUT - But it鈥檚 closed.

HOLLY - It is closed.

[music]

KATE - So we鈥檝e just got up, and Little G鈥檚 with us. Hello. Yeah, you want to go downstairs. But we just had some news didn鈥檛 we?

HOLLY - Yeah.

KATE - We got a text from my dad just saying that Grandma passed away last night peacefully.

HOLLY - Yeah, very peacefully.

KATE - And鈥 Were you going to say something?

HOLLY - I was going to say she was in her home鈥 in a home that she was living in wasn鈥檛 she? In a nice room and鈥

KATE - Yeah.

HOLLY - And your dad was with her.

KATE - Yeah. Because they, I guess you kind of know, you start to know don鈥檛 you when you work in those places that these are the signs to look out for? So they called him, he went back.

HOLLY - And he was with her. And she was the grand old age of 96.

KATE - Yeah.

HOLLY - But it doesn鈥檛 make it any less sad, that she was very old and you didn鈥檛 get to go and say goodbye

KATE - No.

HOLLY - Which is鈥

KATE - The hardest thing.

HOLLY - The hardest thing, yeah.

KATE - Can you see the snow, Gracie? Can you see the snow?

HOLLY - It鈥檚 snowing.

KATE - Yeah, it鈥檚 snowing. It brings some light relief this morning to us all which will be good.

[music]

KATE - Oh, so it has been a really bad day. Yeah. Really bad day. I spoke to her about three o鈥檆lock yesterday and she was like, nodding as if she understood what I was saying. We were Facetiming, my dad was with her in the care home. I told her how much I loved her and, you know, how much we鈥檇 miss her and what an amazing grandma she鈥檇 been. And she managed to speak to all her grandchildren. Dad Facetimed everybody so that everybody could say what they wanted to say, so that was really very nice, and then she had a very peaceful passing, according to my dad.

So, yeah. That was bad. And then I got a phone call about two hours ago from my hospital and I mean, it鈥檚 not a surprise, but they鈥檝e cancelled my surgery which, yeah, I鈥檓 not surprised about but also I can鈥檛 help being a bit gutted about because鈥 You can鈥檛 look forward to surgery, but I was looking forward to it because I was looking forward to the problem being gone and not having to be on hormone injections and not having to have the pain all the time and not having to deal with like the bladder problems and the stomach problems that come with it all and everything.

So yeah, it鈥檚 just been a really bad day and I just feel a bit crappy and yeah. Oh hey, Milo. Have you come to check up on me? So it鈥檚 early. I鈥檝e decided to take a sleeping tablet because I鈥檓 exhausted and in loads of pain and know that I probably won鈥檛 sleep, so I鈥檝e just taken a sleeping tablet and I鈥檓 going to go to sleep, basically because I just don鈥檛 want to, like, face it all. So I鈥檒l have a good sleep and pick myself up and try again tomorrow and be a bit brighter about things hopefully. It just sucks because normally, you know, I鈥檇 go and be with Mum and Dad right now but we can鈥檛. I would have been with Grandma at some point in the last few days. I would have seen her more, well I would have seen her, full stop, in person over the last year and I barely have. Yeah, the only time I鈥檝e actually seen her was on Facetime a few times when the care home鈥檚 been able to arrange it for me. So yeah, it just sucks. This whole thing really sucks.

[music]

KATE - I don鈥檛 know how well you鈥檒l be able to hear this because it鈥檚 snowing and we鈥檙e wearing masks because we鈥檙e outside, and鈥

HOLLY - We鈥檙e going to get鈥 We鈥檙e going for a wintery walk.

KATE - Yeah, just a short one to the hot chocolate shop. So we were just having a conversation about funerals, and what we鈥檙e going to do about Grandma鈥檚. So obviously we both want to go. If everything was normal, do you think Scout would go?

HOLLY - Oh, I don鈥檛 know. I think that would be鈥 I don鈥檛 know, it totally depends on the tone and whether her cousins are going? You know what I mean?

KATE - Yeah. But I don鈥檛 think any of them, there鈥檚 space for any of them now. It depends on the numbers.

HOLLY - How many people can she have?

KATE - Right, well the people at the crematorium said that the maximum amount is 30 but it鈥檚 not as simple as 30 because all the chairs have to be two meters apart from each other. And they have to be set out in, like, a family group, for example. So if you don鈥檛 live with people then you can鈥檛 sit with them. So it鈥檚 like鈥 [loud car] Oh, big car.

HOLLY - He needs to take it easy on the snow.

KATE - I know. He was going way too fast. He鈥檚 going to get into trouble. There鈥檚, like, four chairs at the front and there鈥檚, like, two rows of two chairs and then three chairs. But if someone鈥檚 a one then they can鈥檛 separate the chairs.

HOLLY - Oh, my God.

KATE - Because there鈥檚 not enough space for, like, one chair and then two meters and then another chair and then two meters for 30 people.

HOLLY - Wow. That鈥檚 so complicated.

KATE - Yeah, yeah. So already鈥 So, that limits鈥

HOLLY - Oh my God. As if you want to be, like, thinking about this along with everything else.

KATE - I know. My poor dad and aunty. So yeah, I just don鈥檛鈥 It鈥檚 not as simple as you can have 30 people there, it鈥檚 like ten times more complicated. We鈥檙e literally never going to get to the hot chocolate shop because we鈥檙e walking so slowly.

HOLLY - Well, we have to. I don鈥檛 want to slip and end up in A&E, I mean, you know. It鈥檚 happened before.

KATE - It has. Slipped over, broken both your ankles.

HOLLY - Yeah, exactly. And it wasn鈥檛 even snowing then.

KATE - No. Well, let鈥檚 just think about ourselves. Like, I鈥檓 making a big assumption here but I鈥檓 assuming that you鈥檙e not going to come because you are shielding.

HOLLY - No, I don鈥檛 think I can risk it. I think yeah, no COVID is too rife at the moment for me to go anywhere, let alone being in an enclosed space, which is really crap, because, you know, I loved your grandma to bits and it鈥檚 really sad that I can鈥檛 be there.

KATE - Yeah. But then the question is should I go?

HOLLY - Well鈥

KATE - Because obviously I want to.

HOLLY - I know. I鈥檓 not going to lie, it makes me a bit nervous, thinking of you going and then coming back into the house having been around all those people and鈥

KATE - Yeah.

HOLLY - You know, a lot of your family are key workers and so they鈥檙e still working.

KATE - Yeah, that鈥檚 true.

HOLLY - But obviously if you want to go then I鈥檒l support that and we鈥檒l just have to take the risk and deal with it I guess.

KATE - I know. It鈥檚 just so hard, like what is the right and wrong thing to do? Woah!

HOLLY - Oh, are you okay?

KATE - Yeah. That was close.

HOLLY - I know. It feels like the snow鈥檚 getting worse as we walk.

KATE - It is, I鈥檓 sure it is. Oh, I hate this. I hate it all. I hate that I had to say goodbye on Facetime and not in person. I hate that I can鈥檛 be there for my mum and dad. I hate that we can鈥檛 just go this weekend and just, like, be鈥

HOLLY - To support them.

KATE - Like, just be there and help them with all the crap that you have to deal with. I just hate it all. We鈥檙e just stuck at home sitting with nothing to do and it鈥檚 just crappy. Ergh!

[music]

KATE - So yeah, there鈥檚 a lot to think about before you hear from me again. Weighing up a situation like this funeral feels, well, kind of mad really. But on a more positive note, end of next week is my birthday. Hurray! Goodness knows how we鈥檙e going to celebrate, but it鈥檒l be my first as a family of four. So I鈥檒l keep you updated on any creative ideas we have. If you have any ideas about the best way to celebrate a birthday in lockdown please let me know, because I always love hearing from you. Maybe you鈥檝e got some ideas on how to celebrate a lockdown birthday. If you do, email my producer, Amy, at amy.elizabeth@bbc.co.uk.

And is there anything that particularly, as someone with a disability, you鈥檙e struggling with? The chances are if there鈥檚 an emotion you鈥檝e felt I鈥檝e probably felt it too, so let me know and maybe we can have a rant together. Ouch also have lots of other wonderful podcasts to help keep you going, so may I just recommend subscribing to this on Sounds so you don鈥檛 miss a single episode. Also feel free to follow us on Twitter at 麻豆约拍 Ouch. So, Holly, Scout, Baby G and a handful of cats, extended family members, and I, will see you all next week.

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