91Èȱ¬

The Isolation Diaries04 February 2022bbc.co.uk/ouch/podcast
Presented by Kate Monaghan
Emma-Hello, this is Emma Tracey from 91Èȱ¬ Ouch. And over the last few years we’ve been bringing you Mentally Interesting with Seaneen Molloy and Mark Brown, all about the stuff that goes on inside your head. Over the next two weeks we’re going back to an occasional series that we’ve been taking you to throughout the pandemic: it's Isolation Diaries. It’s been a long time since we’ve heard from Kate Monaghan and her family as they’ve been isolating together throughout the pandemic so I’m really looking forward to finding out what’s been happening over the last few months. The next voice you’ll hear is that of a very unwell sounding Kate Monaghan. music-Featuring upcoming clips. Kate-Hello and welcome to Isolation Diaries, a brutally honest account of my experiences as a disabled person with a disabled family in a global pandemic. I’ve kept my recording equipment in my pocket over the past few months to document my emotions as lockdown rules are constantly changing. Getting everything off my chest has helped me and so I’m hoping it might even help you. If you’ve been on our journey since the beginning when the UK first went into lockdown in March 2020 welcome back. The rollercoaster hasn’t ended just yet. But if you’re a new listener, welcome. I’m Kate Monaghan. I’m a 30-year-old woman with Ehlers-Danlos syndrome which means I have chronic pain and all my joints are a bit rubbish really. Also I have just turned 38; it was my birthday on Monday. So, yes happy birthday to me, but it does mean I’m now 38, edging ever close to 40. Oh God, that’s scary to say. I live with my chocolate and crime drama loving wife Holly, who had a kidney transplant 12 years ago and so is immunocompromised. Holly’s condition means that as a family we’ve been strictly following every government rule to the letter, including months of isolation. The worry of Holly catching COVID has been an underlying anxiety now for almost two years. 
Holly and I have two beautiful daughters, five-year-old Scout and two-year-old Gracie, who we adopted just over a year ago now. Gracie has dwarfism so has needs we are learning to navigate. And Scout enjoyed time away from school over the Christmas holidays maybe a little too much. So, let’s start with some good news: I’m finally getting my long-awaited hysterectomy.
[Music] Right, it’s the day before, the night before in fact, D-Day, or O-Day I should say. Holly is putting the kids to bed and I am getting everything ready. I’m expecting to be in for like two or three nights I reckon. I have got enough pyjamas, knickers – although knickers I probably won’t need that many knickers because they’ll give me those granny pants, won’t they – t-shirts, dressing gown. That’s probably about it in terms of what I’m going to wear, because I’m not going to wear any trousers, I’m not going to wear anything that hurts my tummy. I’m actually looking forward to it. My stomach has been so bad for so long now. I’ve got really bad endometriosis and adenomyosis. Endometriosis is where the womb lining sort of goes around different places and sticks to places, like your bowel or your bladder, in my case bowel and bladder. And adenomyosis is in the muscle of the womb; bits of the endometrial tissue kind of go in there and invade and then make big deposits basically. It’s really painful and I’ve had it for years and years and years now and I cannot wait to get this womb out because it has done nothing for me. It has literally been all trouble and no benefit. And it looks like it’s finally going to go ahead. I’m all ready to rock and roll. Fingers crossed all goes well. Please let’s go well and get this womb of doom out of my body.
[Crying] I’m just recording this because I just had a phone call Wednesday afternoon, I was supposed to be going in for surgery on Friday, and they’ve just cancelled it. The bowel surgeon has gone off sick. And I know it’s not their fault but it’s just so devastating when you feel so poorly for so long, then you’re looking forward to something being done about it and then it’s cancelled. You have to isolate for two weeks before, put your life on hold, and then I’ve been planning for the kids to be looked after, we’ve got all these plans in place about how we were going to cope and you psyche yourself up completely. It’s just absolutely crap. I’ve been limping towards the surgery date and feeling on the edge of collapse but kind of holding it together, because it’s okay, I can collapse on Friday. It’s not the surgeon’s fault they’ve got ill. It’s not COVID because the woman who phoned me who sorts out the lists she said that they’re hoping that he’ll be back next week. So, I just have to pull myself together and go and pick Scout up now. And it's stress on her because we’ve been talking about it, getting her ready for it, just saying this is what’s happening. And now she’ll be thoroughly confused about why it’s not. It’s like a flipping rollercoaster. And with COVID already you have to isolate and worry about visitors coming and all of this stuff and then can’t put it together.  
[Baby crying] Okay today, in fact right now I should be in surgery, shouldn’t I, Gracie. But instead I am back on mum duty because the operation has not happened. And as you know that’s been pretty hard on me. So, instead I’ve taken Gracie to a farm, which has been lovely, but now she’s a bit miserable. She’s okay, she just needs a nap. She just keeps getting cold after cold after cold. And also I think there’s something about kids with dwarfism and their ears because she’s always pulling at her ears. I don’t know if anyone knows about it that could help?gracie-Mama.Kate-Yes my darling? Oh your shoe! Your shoe! Have you got a shoe? Thank you. I felt a bit sad yesterday because to add insult to injury they phoned me up and said I had to go straight in for another menopause injection, because my menopause injections had literally run out the week I was having the operation. So, they were like it's fine because you'll have your womb out so therefore you’ll be in the menopause anyway. So, I had to go and have that injection which, if anyone who’s had one before knows, it’s a really tough one because it’s a big old needle into the muscle of your bum. It really hurts and it makes you feel just a bit sore and cruddy afterwards is my experience. I was really worried about going in, well I still am because it is going to happen, about the kids would manage. But also there was a very small part of me that was looking forward to a really good like bit of time on my own and just have a bit of peace and quiet, some TV shows that I haven’t been able to watch. And instead this is my reality now. 
[Music] So, I was just thinking – oh, mind your tea – so Scout goes back to school tomorrow. Holly-Yah.Kate-What was that noise? Holly-It was a kind of excited noise but then it went off into a kind of oh, because this holiday has been so good. Holly-Yeah. But yeah, her uniform is all laid out. She’s excited and nervous I’d say.Kate-She keeps telling us she’s scared. And you can tell she’s feeling a bit anxious about it because she’s been waking up in the night more and stuff like that. But I think she’s desperate to see her little friends. 
I was looking at the way COVID numbers are going. Yeah I know, which is pretty scary now. And obviously we’re not doing bubbles anymore. So, how are we going to handle it with COVID in Scout’s class? Because I was thinking, I think we need to talk to her head teacher and say we need to know if there’s a COVID case in her class because…Holly-What, you don’t think they’d tell us?Kate-No. Why would they? Because there are no bubbles anymore. Holly-But I mean, we’re a close-knit community, I think we’d find out, wouldn’t we?Kate-Yeah, but not everybody tells you. And what if one of the parents has it? We’d still have to keep Scout off in that case. Holly-Yeah, or keep Scout socially distanced from that child, but then that’s really unfair on that child, isn’t it?Kate-Yeah, that’s not going to happen. Holly-It’s not very fair. That kid would feel like a leper. Yeah, we probably should mention it to her head I guess.Kate-Because as pleased as I am that her bubble isn’t going to burst anymore, because getting to the end of last term it was just popping every two seconds it felt like. Holly-Yeah, well we took her out of school at the end, didn’t we?Kate-We did take her out of school, yeah.Holly-We were so worried about not being able to go on holiday.Kate-And my operation!Holly-Oh yeah, and your operation. [Laughs]Kate-That was the main reason we kept her off. Holly-Yeah. Kate-We need to know. We need to have that information so that we can keep you safe. And if she gets that close to COVID we need to know so that we can... When is it going to go? What do you really think now is going to happen? 
Holly-I don’t think it is going to go. I think we’ll just keep on having vaccinations. Kate-And the vaccinations will improve I guess, won’t they?Holly-Kids will have vaccinations. I guess being a vulnerable person we will continue to wear masks in certain places.Kate-I think what I will do then is tomorrow I’ll either email or phone the head teacher and say this is our situation, please can you keep us informed. Holly-Yeah. Wouldn’t it be weird if COVID just sticks around and we’ll be saying to our kids in ten years’ time oh, before 2020 COVID didn’t exist, we didn’t need to wear masks anywhere. It would be like when you talk about 9/11 and you say, gosh do you remember when we didn’t have to go through all those security things and take your shoes off and stuff like that, but a more extreme version. Kate-For planes, yeah I know. Holly-Yeah, it would be like that kind of weird, do you remember when you didn’t have to have a vaccination? Kate-Do you remember when we didn’t have to lockdown over winter and not ever go out of the house? Holly-Yeah, exactly. Kate-[Music and crying] So, the operation has happened, which is amazing. But a certain somebody does not like the fact that she can’t be with me. No, you’re not very happy about it, are you? You want to be jumping all over mama. So, the operation in the end was okay. Everything went to plan, which is amazing. I was the only person having an operation that day by my surgeons. It happened quickly which was really great. And then because of my disability my mum said that I needed her to be with me in the ward, which to be honest was a massive relief, because she said I would need somebody to help me go to the toilet, I would need somebody to help me mobilise more than a sort of average person. So, that was really helpful because it meant that she was able to be with me all the time. 
[Baby crying] Oh Gracie, mama just has to stay in bed. I’m sorry. And Holly’s had the kids which was great, so she was able to focus on the kids with her mum. But Gracie has not been happy about the whole thing. She’s finding it really difficult that I haven’t been able to be with her or play with her or any of that kind of thing. But yeah, just really, really glad it’s done now. I’m feeling really grateful. gracie-Mama.Kate-Mama will come and play soon. Bring a toy to mama. 
[Music] I just found out that my sister and my niece… [Drilling noise] The projector has fallen down. Did we tell you we’ve got a projector in our bedroom because we haven’t been to the cinema for, like, 17 years, well since COVID so however long that is, which feels like 17 years. So, we had a projector that was just sitting around and doing nothing and we had the bright idea to put a projector screen in our bedroom. And now it’s like a cinema in our bedroom and it’s the best thing we did. Anyway a little insight for you. Sorry, just changing direction here…Holly-Hired hand.Kate-Hired hand, yeah…that my sister and niece have both got COVID; my sister who is double jabbed. My niece was okay. She has had a fever and a cough. But my sister has been really poorly, we found out last night. But what’s really worried me is one of Holly’s kidney friends, who is very similar to Holly in that she has had a kidney transplant, she’s had a baby…Holly-Also she had the same name.Kate-Yeah, also called Holly…she got COVID and she’s been very poorly. She’s been in hospital for at least two weeks.Holly-Yeah, poor thing. She tried to manage it at home, as you would do, but ended up being in hospital. She’s doing okay. Because obviously she’s got a compromised immune system, like me, and it’s just very, very slow. Kate-And my mum, I just sometimes think my parents aren’t taking it seriously, like they were taking it seriously and then now they’re not taking it seriously or not being as precautionary as I would enjoy them to be. I hope my sister being ill has maybe shown my parents that even though someone’s double jabbed and very healthy they can still get very poorly from it.Holly-Yeah, maybe that’s that what do you call it, they need like a kick up the arse, literally.Kate-I think they’re just fed up of it, like we all are. Holly-Aren’t we all?Kate-I was working yesterday. And the operation has gone really well, I feel really great, but the one thing that is not making me feel great is the hot flushes. They are absolutely kicking my bum. Holly-Wow, we went swiftly from your parents and COVID there to hot flushes.Kate-No, you’ll see my link.Holly-If I could look inside your head.Kate-You’ll see why I’m saying it. The really difficult thing is the hot flushes whilst wearing a mask. It’s awful, but I’m still going to wear a mask because we have to and we have to keep you safe and me safe. I think I’d get quite poorly with it because to have COVID plus chronic pain would be awful, wouldn’t it?Holly-Plus you’ve just had surgery.Kate-Plus major surgery, yeah. Not great. It’s quite scary how close it’s got now with Beth and Hope, not that they live physically close, but in terms of our family. And I just feel so grateful that they’ve had their vaccine, or Beth’s had the vaccine, because she clearly would have been really poorly with it had she not had the vaccine. We just need to keep staying safe, Holly.Holly-Yeah, we do.Kate-[Music] Holly, don’t go to sleep.Holly-Why?Kate-Because I have got a question. Holly-Hmm?Kate-You know they’ve taken out my womb and ovaries and…Holly-Cervix.Kate-…cervix, where does my vagina go?Holly-Oh, I don’t know.Kate-So, there’s a hole, which is my vagina, and it goes up.Holly-Have they sewed it up?Kate-Yeah, is it like a road to nowhere? Holly-Just goes up until it bumps into your bowel, your stomach or…I don’t know. That’s a really good question. I might have to look it up: hysterectomy diagram. There’s quite a lot to remove, isn’t it?Kate-You need to audio describe it now, Holly, because I’m too tired and in pain. Holly-Okay, well it’s called, this diagram, it says total hysterectomy. And it’s got a diagram of the ovaries, fallopian tubes, uterus, cervix and vagina. And you can have a total hysterectomy, a radical hysterectomy or – what does that one say? It’s got writing over it – total hysterectomy with Salpingo…what the hell?Kate-Oophorectomy, that’s what I had.Holly-Yeah, because the total hysterectomy is just the womb.Kate-But I had this, which took all the ovary and fallopian tubes and everything away. Holly-On the diagram it’s got little cut-out lines, but it’s missing the scissors, so you can see where it’s cut out. Kate-So, what happens now at the top of my vagina? Because I was lying here thinking why aren’t I bleeding very much. Holly-They’ve sewn it up.Kate-Because last time I had all this endometriosis surgery I’ve had terrible bleeding. Holly-I’m googling something else now: hysterectomy, do they sew the vagina up.Kate-None of this is giving me any answers. Ugh, that’s not a picture I wanted to see.Holly-That is a whole video of surgery. Kate-Wow, do you think it’s mine? I wish they’d filmed mine. Holly-Well, you got pictures, didn’t you, of your actual bits?Kate-I did.Holly-Because our friend works in the hospital. Kate-Yeah, so she got to dissect my uterus. The vagina is just like an empty husk of a thing now.Holly-Maybe just don’t give it too much thought. Just enjoy the fact there’s no bleeding. Just don’t think about it.Kate-I’m not sure that’s how therapy works though. Holly-Wow, you’d know, Kate.Kate-I would know, it’s true. And the last thing she says to do is just don’t think about it. But then we haven’t really talked a lot about vaginas in therapy, so. Holly-I bet you have. Kate-Oh yeah, actually I have, it’s true, of course I have. Because last time do you remember how much bleeding I had?Holly-Yeah, weren’t you wearing nappies on those?Kate-Yeah. But hey, we’re a week out from surgery now. And we went out for tea. Holly-Yeah, that’s the first time you’d probably left the house, isn’t it?Kate-Yeah. Holly-Successful. Kate-It was but there were just too many people around. Holly-It was really disconcerting because none of the waitresses were wearing masks. I didn’t expect that. It was quite loud and every time they bent down near me to ask me a question I was like leaning back. It was kind of weird. I don’t know. And I would have felt weird to put my mask on at that point, do you know what I mean?Kate-Yeah, it felt rude. Holly-Yeah, it felt rude. It shouldn’t feel rude.Kate-Yeah, I just feel almost like I want to go back into my house and not come out of it. 
[Music] Okay, so it’s 3:13am, in the morning, I’m recording this really quietly because Holly is asleep next to me. But I just woke up and I checked my email, I just looked at my phone, and I had an email. I had a PCR yesterday for work basically so that I could do some work this week, go somewhere to do some work, and they’ve been routinely PCRing us every week. And I’ve been feeling completely fine, and I’ve just got the result back and it says that I’ve got COVID. Yeah, I’m really shocked and really worried. I can’t quite believe it. I don’t think I have any symptoms really apart from a very slight cold. And then last night I was really, really tired so I went to sleep at 9 o’clock, went straight off, which is very unusual for me but that was the main thing. I feel so stressed. I feel like I should move out of my bed already because Holly’s lying next to me. I don’t know what we’re going to do. I don’t quite know how to tell her. It’s like everything we’ve been worrying about for the last two years has suddenly happened. 
[Music] So, yes, I’ve literally just told Holly that I do indeed have COVID. I’ve recorded the aftermath. We still have to sort out what to do next, what we’re going to do with the kids. Holly’s got to do a test. I don’t even want to think about what we’ll do if that’s positive. And I’m still trying to digest what this actually means for me too. Am I going to start to get really poorly? I don’t know. I guess we’ll soon find out. So, yeah this rollercoaster is about to go up a notch, and I’ll report it all to you next week. Anyway how are you all doing? I know so many people with COVID at the moment. The pandemic really doesn’t feel like it’s over at all, does it? So, if you’ve been in my boat and had to break the news to a worried loved one that you have COVID or even had to warn them that you might have passed the virus onto them feel free to get in touch. I might read some out to Holly to help her see lots of us are in the same boat. So, thank you in advance for helping me out. 
Please do email my producer Amy, that’s amy.elizabeth@bbc.co.uk. How has having COVID impacted you as someone with a disability? Here at Ouch we’re always very interested to hear your experiences. And remember to keep up to date with what were reporting on for you. Find us on Twitter @bbcouch and Instagram @bbc_ouch. So, until next week keep all your fingers and toes crossed for me that Holly’s okay, I’m okay and that the kids are okay. Only time will tell.