Let's Take Care - Support for Carers of Disabled Children and Young Adults
Melissa and Jane have been caring for their daughters for over 20 years, helping them to lead hugely successful lives. But they've made some mistakes along the way, and learnt a lot. Or, learnt the hard way.
They've been tired, burnt out, broke, ignored, isolated - yet still expected to keep going.
Let's Take Care is their way of helping other carers of disabled children feel less alone - and more equipped to cope with the realities of care that no one talks about.
In each episode they'll talk about the emotional and mental weight of lifelong care - what it's like to fight the system constantly and how to survive practically, emotionally, physically.
They'll be sharing what they wish they knew 20 years ago ... and hoping to make you laugh as well.
Let's Take Care - Support for Carers of Disabled Children and Young Adults
Episode 6: Health tips for carers
Being a carer can take a mental and physical toll.
In this New Year episode Jane and Melissa talk about how over the years, they sacrificed their health as they prioritised their children - and why they wished they hadn't.
Melissa opens up about her cancer, and Jane talks about her heart condition.
The two mums share their tips on staying healthy, and they discuss how looking after themselves has made them better parents and partners.
From sound baths to country walks, this episode is full of practical tips plus, as always, plenty of laughs.
#ParentingADisabledChild #DisabilityParenting #SpecialNeedsParenting #CarerSupport #ParentCarers #CarerLife #TiredParentsClub #CaregiverSupport #ParentingJourney #InvisibleLoad #newyeartips #selfcaretips
And it weighs on you, and you wake up in the middle of the night feeling dreadful, just you know, how could I be so self-indulgent as to go to sleep? Oh my god, who did I think I was, you know?
SPEAKER_00:There's a high instance of cancer in my daughter with cerebral palsies friendship group. My non-disabled daughter. All parents are healthy, completely healthy. So I think there's something in it. Hello and welcome to Let's Take Care, the podcast where we, Melissa Paul and Jane Holmes, talk about the pressures put on parent carers by systems, not by our disabled children. And we are also talking about how we can build more sustainable, healthy, and robust lives. Today, for our New Year episode, we're looking back. We'll be talking about what we got wrong, how burnout crept in, and what we're doing now to change the story. If you're a parent carer early on in your journey, we hope our reflections help you protect your own well-being in ways that we didn't always quite manage. Let's get into it. Happy New Year!
SPEAKER_01:Happy New Year!
SPEAKER_00:1st of January. So yeah, it's time to start afresh. Oh, it's a bit cliche, isn't it? Start again, starting to use it. It's cliche that new exercise, but we'll give it a go. We all do it, don't we?
SPEAKER_01:We all think right new year, new resolutions. So yeah, I think it's a great idea.
SPEAKER_00:We just want to thank all of our listeners who tuned into our brand new podcast last year. But it was just sensational, wasn't it? Really fantastic. What the support is. Going into 2026, really, really pleased and welcoming all our new listeners and friends around the world, actually. Yeah. And we hope that our conversations about being parent carers of disabled children and young adults are really hitting home with some of you. Um and we'd love to hear from you, so uh write in.
SPEAKER_01:No, it's fantastic. Well we've we've we've had listeners from every continent now apart from Antarctica. You can't get wheelchairs up there because no, so there's not many carers. So it's brilliant. I mean it's great that there's so much international interest. We're really, really uh pleased.
SPEAKER_00:We started this podcast because our children are older, which gives us a bit of time for reflection, right? And we also run our charity, Building for the Future, where we talk to lots and lots of carers. And we are now at the stage where our children are a bit more independent and it's giving us a bit more time to think, think back what we did wrong, what we want to do going forward, and we kind of chatted, didn't we? And realised we didn't always protect our own health because we were fighting so hard and providing so hard and raising so hard, and doing a blooming good job like every other pet send parent out there does. You know, we everyone does an incredible job. But we w hope that we are opening up the conversation about what it means to be a parent carer, the kind of pitfalls and downfalls, and also the joys. We talk a lot about the joys, but we want to make sure that people are looking after themselves in a way that perhaps we didn't. And we I know I didn't.
SPEAKER_01:No, I think when you've you know you've got a baby, when anyone has a baby, um that baby almost instantly comes first and something takes over you, doesn't it? Where your needs come second, and that's how it should be. Um and then as the baby sort of grows up and and and doesn't need night feeds and becomes toileted and learns to talk and all the rest of it, you can sort of ease off and and start looking after yourself a little bit more because you you get that full night's sleep and a moment to exhale. You do, and and you can safely leave them with grandparents and so on and go off to the gym or whatever it is you want to do. But for us, that point never came.
SPEAKER_00:The on-switch is always on.
SPEAKER_01:It's always on, and I am as still now, um my daughter's twenty four, you know, carrying out all those those things that you do when you have a baby. So um I mean we have care now, so that's eased things a lot for us, obviously. But for the first sort of 21 years of her life, we did have broken night sleep every night. Um, she has never learnt to talk, so she communicates using um you know alternative methods of communication by pointing to letters on a board, um, which in the middle of the night when she's crying is impossible for her. So I'm you know still in that situation where I am up well, you know, until relatively recently up in the night not knowing what was wrong. So um I think that that sort of easing off of the level of care never really comes. I mean it has it didn't come for us until she was 21. Um and and then we got care a a full care team in. So I think that is is is for me something that I really want to get across. People don't realise that that level of of intense care that you give a small baby remains that intense until you have other people coming in to help you with the care.
SPEAKER_00:I don't know what it's like now when you you have a disabled youngster or what it's like in other parts of the world, but our council didn't help with care until the children were. I mean, I think we got eight hours support when she was a month. Um so we had maybe two hours at a weekend where we could get some kind of respite and break. Term time only. So you you were just always on. We were always always on.
SPEAKER_01:I mean we were very lucky. We had she we we we only had one child and we were a two-parent family. I mean, so many families have more than one child and they are all single-parent family. So we we always, you know, compared ourselves um favourably um because we we saw obviously through the charities so many families who were really struggling. Um we could tag team it a bit, but yeah, I think you know you only really realise the impact it's having on your health when something goes wrong.
SPEAKER_00:Something goes wrong. And it's hard to see those signs. I definitely didn't see any signs. I mean they call it caregiver burnout in the States. Okay. They've they've named it um I don't think it's been named here yet or acknowledged really, because we're put under so much pressure by the system. But I've definitely had burnout, I don't know, m multiple times. Because you're just treading water all the time and you're not looking after yourself, yeah. You're not eating properly, you're not sleeping, you're not looking after your mental health. I certainly wasn't. No. And I guess the signs of burnout, if I look back, it's insomnia, maybe drinking too much, to try and go to sleep. Yeah. I drink a lot of red wine, I don't do that anymore. I used to call it my sleepy juice. So you just kind of fight one thing with the other, and then and your substitute isn't, you know, wine isn't really a great substitute for not being able to get to sleep. You think it is because it feels good. I guess I was quite angry. You kind of build up a lot of tension in you, don't you? And everything becomes extra stressful. And just yeah, just giving up and wanting to hide away, I think. And that I find that a lot talking to other parents of disabled children, they just think, okay, enough. And they just close the doors.
SPEAKER_01:Yes, I think you see that quite a lot, and and I totally understand that. Um I experienced everything that you're saying pretty much, and I think you know, for me, I mean, even when my daughter started residential school, which meant she was away um for four nights in the week, you know, everyone was sort of saying to me, Oh, that's gonna be lovely for you. Well, no, I was terrified permanently the whole time she was away, and I my sleep pattern has has never recovered from from her early life. I mean, I I I don't think I've ever slept through the night since for 25, four years, you know, because even though we've we've got a nightcarer in now, I'm still, you know, waking up with a jolt or waking up at three o'clock in the morning just thinking, oh, I just really want to go and check her, but I think I can't keep doing that. I can't go down that rabbit hole, you know, because otherwise I'll be up and downstairs all night just checking her. You know, I still have oxygen monitors, the finger ones, you know, in her room. And I, you know, I think I'll just want to check that she's okay. It's pure trauma. It actually is PTSD. I think we've had so many scares with her health and nearly lost her so many times to sleep peacefully in bed while she's basically in the care of somebody else is never gonna happen for me. Um, you know, so that's that's that.
SPEAKER_00:But also there's so much to do when you have a disabled child that you feel like sleep is wrong if you've got things to do. Totally. I remember, and this is something I indulgence. Yeah, I'll admit that I did wrong. There were times when uh I would stay awake all night, maybe a couple of times a year because I thought I'm gonna stay awake all night, do all that paperwork that I've that's nagging me, you know. I did all the ironing, I caught up on TV that I wasn't able to watch. Yeah, that was silly, how silly of me. And then I would just go on the next day. But I at the time I felt accomplished because I'd done my ironing, I'd done my paperwork, I'd done this and that. And that was a way of coping. How crazy, crazy.
SPEAKER_01:But you look back, and I I mean I I've definitely spent hours in the middle of the night. I don't think I ever consciously said I'm going to stay up all night, but I definitely went to bed, went to sleep, and then woke up in the middle of the night and got on with stuff. And then you know, or you'd you sort of wake up with a start. I mean, I still do this, I think, you know, it's such a sort of chronic low-level stress and worry and fear that I some sometimes wake up in the middle of the night with a sort of you know, hand round my throat feeling, oh I I need to look into this. Yes. I need we need to try this, we need to try that. Um, and I'm frantically googling, you know, speech and language therapy techniques in the southern hemisphere kind of thing. You know, could we try this? Could we try that? You know, there must then you know, there's a great urge to sort of not leave any stone unturned because this is your child, and if you if you do leave stones unturned, you're failing them. I mean, that's a constant sort of feeling, constant guilt, failure, feeling inadequate, and and it and it weighs on you, and you wake up in the middle of the night feeling dreadful, just you know, how could I be so self-indulgent as to go to sleep? Oh my god, who did I think I was, you know? So yeah, I I'm I'm definitely and that still happens, actually. I think it probably always will. Yes. I mean I think my body's almost got used to it, honestly.
SPEAKER_00:That's something that we're going to carry with us. Yeah. But we're trying, we're trying to change our ways, aren't we? We're trying to Yeah. Because as you know, and I've told the listeners before that I was diagnosed with breast cancer in 2023, and I feel quite strongly that the lifestyle that I was leading, partially forced on me by being a carer in the system, may have led to the cancer diagnosis. And what's led me to think that, and I haven't looked at any medical research, and I'm not a medical person, but it's just a hunch, you know, when you've got a hunch. If I I've got two daughters and one has cerebral palsy and one is non-disabled, and if I look at the pockets of friends that they both have, there's a high instance of cancer in my daughter with cerebral palsy's friendship group. My non-disabled daughter. All parents are healthy, completely healthy. So I think there's something in it, and that's why I want to talk about it more. There seems to be more cancer, more ill health.
SPEAKER_01:Well, because you're constantly stressed out, you're constantly chronically stressed, and your body's in a constant state of inflammation and you are sitting dyed out for it. I think, aren't we? Oh, I I haven't had cancer, but I have had problems with my heart. And that was when I was in my late 30s, so I suppose I'd been caring for about six six years at the time. And my heart just suddenly started going, hey wire, the rhythm does went into complete arrhythmia, which was so frightening, and I didn't know why. Um nothing seemed to be triggering it, but yeah, caffeine maybe and alcohol maybe, but you know, it just sort of happened out of nowhere, and it was incredibly frightening because your heart just suddenly starts to go into an arrhythmia, and you think, hang on a minute, am I it's am I gonna be here in five minutes? You know, and it's it's really frightening. So I think I mean that's and and I when I went to the um cardiologist about it, they sort of said, Oh, well, you know, you've got a disabled child, so you're stressed, so there we are. It's like, well, yeah, I have got a disabled child. I am stressed. I am stressed, but please don't just you know pass that off as a kind of like, oh well, that's that that's your situation, that explains your symptoms by that's a life dealt with. So it's uh it's left to us then to try and find ways of mitigating those risk factors, isn't it? I mean, you know, all that you've done to prevent your cancer coming back, you know, and I've done to pres to sort my try and protect my heart. I mean, it's just frightening. And worse, having these illnesses or these conditions, because you we can't leave our kids behind. It's too worrying, it's too frightening. Everybody is so scared, aren't they?
SPEAKER_00:And also I guess we think we can't get ill and go into hospital because where will my child go? Who, you know, we ha might have family members who can step in, you know. As I've said before, my family are fantastic, but say I had to go into long-term, you know, in hospital for a while, no one can do what we do with our kids.
SPEAKER_01:No, that's it. But I think for me, um, I just think for as long as I possibly can, I'm going to make her life as good as I can possibly make it. And then when I can't anymore, I can't anymore. And that's it. So, you know, I feel quite strongly about that. But yeah, it's it's been um a journey, and I think that sort of first flag of okay, this is this is now impacting on your health, that first red flag, and kind of you know, then you s you're forced to think actually I need to do I need to do something. I you know if in my case my blood pressure's always was has been really high as well. So I've had to and I've been on medication for that, and because of my heart position, I have to get my blood pressure down to a an acceptable level, and you know, it it it's still not wonderful, but it's much better than it was. But I now actively take time out to and I like listening to those um hypnosis, calming hypnosis recordings, um, just of deep relaxation. And I've I'm trying all different types of supplements and trying to exercise more, lost weight, and I'm trying, you know, so I'm all the things I've tried trying to do, but I'm you know, it's still really hard because we are still under a state of chronic stress, and that that is something that that has a negative impact on health, and that's that.
SPEAKER_00:And it's taken us nearly three decades to get here. Yeah. Trying to look after ourselves as carers. Um but we're learning, we're learning. I mean, luckily we haven't had, you know, huge crises where we couldn't cope and our children had to be in put in long-term respite or whatever, but it's come close, I'm sure, and it does with a lot of other families, and that's a real worry, isn't it?
SPEAKER_01:When my husband hurts his back, my daughter goes to yoga, a fantastic yoga teacher who specialises in disability, but she has to get out of her chair onto the floor, and obviously there's no hoist because there's never a hoist except at home. And um he picked her up from the floor, and she's 50 kilos, so she's quite heavy, really, and there's no kind of bounce into his arms, you know what I mean? It's a bit like lifting a sack of flour, I think. And um he's he did his back in really, really badly. Um, and he's been absolutely out of action all week. And yes, we've got carers, yes, we've got hoists at home, but even so, even putting a hoist sling underneath somebody is a wrench for the back. People think, oh, you've got hoists, you're okay. Oh, you've got carers, you're okay. You know, oh you've got a wheelchair, that's fine. And people, I think, outside of our um little orbit look in and think, well, you know, you've got benefits, you've got a motability car, you've got a wheelchair, you've got hoists, you've got carers. Bloody hell. What more do you want? You're fine. Yeah, and they're not absolutely no idea. It's literally back back breaking. And my husband being out of action for the last week showed me just how how much he uses his back and you know, and how much he does. And you know, he's he's um he's hopefully coming out of it now, but he's been really in a lot of pain and hasn't been able to do anything, and so you know I've had to step in, which obviously I'm happy to say I'm not saying that, but it's you know, the carers can't always do everything either because of manual handling regulations. You know, putting her coat on and taking it off is too mad job sometimes. So, you know, it's people don't understand. I mean, you can see why they don't understand, but it would be really nice to think that they could open their minds up. There's so much publicity at the moment about how disabled people are scroungers, they're getting everything for free, they get a free car, they get this, that, and the other. It's absolute nonsense. People just need to educate themselves and see what the situation really is, and then make their judgments rather than just listening to, you know, trashy tabloids. Well, luckily your back's okay. For now, yeah. I have had lots of problems with my back, but thank God that's one of the things that I do that to look after myself. I go to a chiropractor every two weeks for maintenance. Um, I don't just crawl in there on all fours when I've got a problem anymore.
SPEAKER_00:That's a great illustration of the situation we get ourselves into. You wait till there's a huge crisis and then you think, oh, I must look after myself.
SPEAKER_01:Yeah, you're doing insurance. I'm trying to do some yeah, so I I do I do go to the chiropractor every two weeks, and and thank God I haven't had any problems with my back for nearly two years, which is m a miracle for me because I had terrible bulging discs and sciatica and that kind of thing for a long time. But thank God I've I've been quite good. My back and it just shows you you need to preempt these things and and get the care for your self-care in early, not leave it till you hit crisis point.
SPEAKER_00:One good tip I would pass on if you are doing a lot of manual handling is to actually wear supportive hand, I don't know what to say, not gloves, wraps. No. Because I've had terrible trouble with my wrists from lifting, from manual handling, and from things like, you know, if you have a disabled child like I do in a big power chair, you're always driving big vehicles. So the bigger the vehicle, the higher they are to get up into pull yourself up into.
SPEAKER_02:Oh gosh, yes.
SPEAKER_00:Yeah, the doors are bigger, the doors are heavier, the boot the boot is heavier, it's higher. You've got a ramp, you've got to pull down or lift, and then you've got the the anchors to get the wheelchair down. So you're doing so much more with your hands than you ever realise. And that that's where my arthritis first started and my wrist weakness. And looking back when I was in my late twenties, I wish someone had said, put some hand supports on. Because when I get them on now, it feels great. But had I put them on years earlier, I might not have had the overusage and the damage and the arthritis setting it. Maybe. I don't know, but that's one thing.
SPEAKER_01:But even arthritis is inflammation and and stress causes inflammation. So I think all of these chronic things are caused by stress ultimately. You made me laugh about the car though, and climbing into it. I mean, we we've just got a new motability car for our daughter, and by the way, she sacrificed half of her benefits to pay for it, and also we had to come up with an£8,000 down payment. But anyway. And you have to give it back. It's not your grant for that. Well, yeah, and and and the car is only still only leased. So I think, you know, just a little bit of education there about the motability scheme. But we've just recently got a new van and it it is a proper van, it's like a transit van in size because we do need that space for all the equipment. And the care careers because she has two to one care. And I got the shock of my life when I when it arrived and I went in to drive it round the block just to have a try. How the bloody hell am I supposed to get into that? Yeah. I mean, you you have to, it's like a flight of steps to get into that like a run and a jump.
SPEAKER_00:And I just have steps in.
SPEAKER_01:There's nothing, there's nothing to ha hold on to. You want a handle to pull yourself in and there's nothing. So yeah, that was a bit of interesting gymnastics. I mean I've got I've got my my technique now. But I mean I was going I went in and I sort of like lay across the front of the seat on my tummy and then kind of got my legs round to get in.
SPEAKER_00:Oh, it's good we can laugh at some of these things. So what else does self-care look like to you? What uh what uh what else are you doing that or will you do this year?
SPEAKER_01:I've had a real epiphany actually. I've been having since my my both my parents died quite close together and I also lost um a couple of other people that were really important to me. And I started having grief counselling and I've carried on doing that and it's kind of turned into counselling counselling now. And I've had a real epiphany about I think you know, I think when you're worn down and ground down by the system, the service providers making you jump through hoops and you feel like a performing dog, you know, just to get the basics that your child needs. I mean, I could really go on about that for hours and bore everyone senseless, but you know, you you your self-esteem takes a dip, inevitably. Um, however much you might wake up in the morning and think, oh, you know, I'm gonna go and I'm gonna do this, I'm gonna do that. You know, things just chip away at you.
SPEAKER_02:Yeah.
SPEAKER_01:And, you know, you're tired because you haven't slept properly and you're probably in pain because of, you know, similar reasons, etc. etc. And you know, I I became quite a a sort of, you know, people were walking, starting to walk over me a bit, and people are surprised to hear me say that because I come across well, I come across as being quite quite tough, tough. I talk tough, but I think ultimately, you know, I was suddenly realised I was quite overwhelmed with other people's problems and and that and those were people that you know were never going to be supportive to me in return. So I've had a bit of an epiphany, which is that you know, anybody that's a drain is gone now. And the people the the radiators are are the ones that are going to get all my love and attention now. And that so my circle has become quite a bit smaller, but much more nourishing.
SPEAKER_00:That's a good healthy tip. Yeah.
SPEAKER_01:Yeah, so so people that you know have unfair ex unrealistic expectations of me, who want wonder piece of me, and then you don't hear anything back from them, who uh you know, criticise, um all these kind of things. They're just they're just not people I want in my life or close to me anymore. So rather than having quantity, I've definitely gone for quality in my my circle of friendships and and and within my family as well. It's very difficult to drop your family, but uh and I've got some I've got some really wonderful members of my family who I am really close to, but I've also got others who are unbelievably selfish, you know, and dismissive of my daughter, and I'm afraid they've gone out on a very long lunge and I don't want them close to me anymore because it's too much effort, it's too much effort, too much energy for the sake of what? You know, having somebody else in your life, you've got to send a Christmas cartoon, I don't think so.
SPEAKER_00:So that's good. You're learning to protect your own mental health, yeah.
SPEAKER_01:Protecting mental health, I think, has come, I think has come as a result of well, for me, the counselling, but also it's a logical next step after looking after your physical health. You start I mean, I've started getting interested in supplements, yeah. And I've made a friend with a most wonderful woman who runs a networking group. She's an ambassador for a sort of set of supplements, she also runs a fitness class. I'm not very good at accepting help. People say, Oh, why aren't we? We're not. No, we're coping. I think because you feel if you accept help, then that's admitting you can't cope. And you can't possibly admit you can't cope. Never. Because otherwise it all falls apart. But this woman has been quietly nudging me and quietly insisting that she will help me. And honestly, her support has been invaluable because I've got some amazing supplements, yes, um vitamins. I say because I'm not American. Sorry, Melissa Beth. Vitamins and minerals and nourishing, nourishing stuff, you know. And I've also um, you know, I say I've been to a chiropractor twice a month, but I also do a fitness class which focuses on core strength, balance, resistance, strength. Core strength to be able to do that. I mean, you know, yeah, core strength and and and the glutes and getting up off the chair without hanging on, that kind of thing. And that has been absolutely invaluable as well. So I'm you know, I'm I'm you know, people that push push you gently, but um uh to to allow allow you to let them help you, I think has been, you know, a revelation to me actually, because I think actually I can let people help me without losing the reins. That isn't one doesn't necessarily lead on from the other. I don't have to do everything, I can let people care. And that's been, like I say, a real revelation to me because I was just such a control freak. Yeah, and you know, managing everything myself, thinking if I didn't do everything, it would all fall apart and the wheels would come off ridiculous. But that was we all think that, that's just human nature. That's stress, isn't it? And stress that does that to you.
SPEAKER_00:Of course, it makes you tricks your mind, yeah, definitely. Yeah, just going back to what you said about the taking the supplements, isn't it crazy? Because and I know you because I've known you for a long time, you put your daughter's health utmost, yeah. Making, you know, the same as I did, making organic, fresh food, variety of food, and making sure that they have supplements. Yeah, we forgot about ourselves. Isn't that until now? Yeah. Until we're postmenopausal or menopausal in my case, over 50, and now we're thinking, oh, now it's time. Yeah, and I think, you know, I mean it's never too late, but it is a bit late, but it's good that we're doing it now.
SPEAKER_01:Yes, better late than never, I suppose.
SPEAKER_00:We m we made sure our kids were super healthy. Well, the healthiest that we could get them ourselves. We forgot, you know. Now I take I don't know how many tablets I take now. All kinds of different things, maybe ten a day. And I feel good on it. And I also take um make sure I take an electrolyte.
SPEAKER_01:Yes, you've always said about the electrolytes, haven't you? Yeah.
SPEAKER_00:But the one the healthy ones, not the sugary ones, the ones from the health food shop.
SPEAKER_01:Okay.
SPEAKER_00:This isn't well, you're a doctor's daughter, so you know all these things and I don't.
SPEAKER_01:I'm just pointing it out because I I went down that, made that mistake myself. I think um, yeah, I mean you you know, you do you do everything you can for your child, and if money's tight, which you know, for me and you for you, but especially when they were younger, it it it really was, and you put their health first, so you you will rather buy organic for them, for example, and pay for the expensive supplements for them, and then you can have shitty stuff yourself because it doesn't really matter. And it really does matter.
SPEAKER_00:It does, but you know, you want stuff that tastes good and keeps you going, and yeah, well that's right, yeah.
SPEAKER_01:But it's also a a a a salient lesson, isn't it? That you know, look, they're now healthy and we aren't. Yeah. So that's a hmm, yeah, we can we can't.
SPEAKER_00:I always got to a point where um I was managing everything, and then if someone would say, because I've always trying to, you know, I've always had a problem with my weight, someone said, Oh, come to an aerobics class or come out walking, and I was I needed to do that for lots of reasons, but I didn't want to tip the balance and affect how I was coping, because I thought, okay, if I start doing exercises, I'm gonna be more tired and I'm gonna need more time for showers, I'm gonna need more money for exercise equipment. But right now, I know I'm overweight and I need to exercise, but I am coping and everything's fine. So I wanted to stay on that level and not affect any of my um levels, whether that's energy or happiness or unhappiness, whatever. I was I just wanted to plateau and keep like that and not get into any danger of being too tired if I'd exercised to then give my daughter less.
SPEAKER_01:Yeah, no, that's it, no, totally.
SPEAKER_00:I was talking to some other people about um self-care tips and and it's great now that we've got access to online things because my daughter was born in a year a year after the internet came out, so life is very different for us when we were raising them when they were young. Yeah. But now, of course, there's some great apps out there, um Headspace, Balance, and there's probably lots more. There's one for carers now called Mobilize. I mean, I'm not very good at that meditation kind of stuff. I think it's all about tuning in and it gives you pointers and uh guidance on how to to relax. But uh I think it's really worth a shot, especially well, depends if that you have to pay for them, then that's but that's another thing. But um I'm doing more I think I've mentioned this before. I've tried somatic yoga because you can do it seated.
SPEAKER_01:Oh what is that?
SPEAKER_00:It's I'm not gonna explain it because I'd get it wrong. But it's about apparently we hold our emotions in our hips, and so you can get really tight in your hips from holding everything in. Okay, so somatic yoga is about hip stretching.
SPEAKER_02:Okay.
SPEAKER_00:And you do it on the floor or on a chair. Um, I've just found uh a YouTube video and I replay it over and over again and do it every other day, and it has been so good for not just the hips but everything. And it's something you can do at home because that's another thing as well, you know. If you've got young children, yeah, it's very hard to leave the house. It's really hard to leave the house.
SPEAKER_01:It's really interesting about your yoga, um, because I I actually did have really bad hip pain after my mum died. So I think there's definitely something in that. That's I'm really glad it's helped you.
SPEAKER_00:Yoga at home, following it on YouTube, is something that you can do with your children or with your partner or with your and it doesn't cost you anything, and you're both, you know, all of you are getting some exercise and stretching and well-being. So much online. I never thought I'd like yoga, but I do. I really enjoy it and I look forward to doing it.
SPEAKER_01:So, what else has helped you apart from the yoga? What what other things have you have helped you to sort of look after yourself better? Definitely getting outside and walking. You don't realise.
SPEAKER_00:You know, I I used to walk a wonderful family dog every day, sometimes twice a day, and I didn't realise, you know, when she passed away, um that affected me. It's so good for your mental health to get outside and walk. Yes. As obviously as well as your physical health. But I like walking in the woods. I find it easier on my joints because walking in the pavement is no good. Yes. So I love a good well, I've got a five-year-old grandson as well, so going out out in the forest is just so much fun. Good for us. So the floor's a bit sort of springy, isn't it? It's springy, yeah, it's a bit kinder on you. And I can't remember if I've mentioned this before in previous podcasts or not, but I've really got into sound baths.
SPEAKER_02:Oh wow.
SPEAKER_00:The old me would never have laid still for an hour and tried to switch off. But with the right teacher and in the right environment, it is just a tonic. It is so wonderful, so healing. You go into a a room with a practitioner, and there's lots of other people, and it's a really calm space, and everyone's really quiet, and then he or she will do the sound bath, but they'll do a few things before to help you relax. And you snuggle up and get cozy on your yoga mat and your blankets and everything, and and it just transports you, and that's kind of what you need to set your brain, but I I I'm gonna look into doing it a bit more now.
SPEAKER_01:You've reminded me.
SPEAKER_00:I really highly, highly recommend it. But again, if you haven't got the time or the money, you can listen into frequencies on Spotify.
SPEAKER_01:Yeah.
SPEAKER_00:You recommended that in the past. That helps you switch off um and and chill out. Anything to help you relax more really and not be so tense. I would advise also to really look at your sleep. Like really look at every minute detail of your bedroom. Is it an oasis? Is your mattress the best it can be? Is your pillow, you know, supporting your neck properly? Yeah. Are the right scents in the room? You know, I like sleeping, you know, the it's important to me to have really good sheets, but then one sheet has to be the kind of brushed cotton because it's extra cozy. And I like um a sleep mask on now. Okay. And I don't like lavender.
SPEAKER_01:I love lavender.
SPEAKER_00:I don't like lavender. I know it's really good for you, and it's I have uh loads of lavender in my garden in my new house.
SPEAKER_01:I'll come I'll come and uh I'll come and take it away for you. I love it.
SPEAKER_00:Or I could make some sachets and give them to other carers through our charity. Um but my my daughter's found me a different scented sleep spray and I think it's eucalyptus, which is a scent I love. Oh wow. So yeah, look at everything, you know, the pajamas that you're wearing. So just try and get a good we might not sleep much, but if you can get every element to get you as cozy as possible. So I've really worked on that. I've really, really worked on they call it sleep hygiene in sports, so that athletes get really good, solid quality night's sleep. They look at everything. How you're breathing, how you're laying, you know. Yeah. Are you drinking water before bed? Um everything. So I've kind of I've learned a bit of that, which has really, really helped. And you know wake up fighting the next day. But that's about it in terms of exercise and and relaxation. But I'm still learning, I'm still trying. And what I've done recently, and I think it's because I had cancer, I have found that counting blessings really helps my mental health.
SPEAKER_01:Yes, it's a really good exercise to do actually before you go to sleep at night. I've tried to persuade my husband to do it. He feels a bit a bit silly, but I'm pushing him. Because I think if you talk about what's gone well that day and what's made you happy, yeah, you know, things that have given you a lift, you go to sleep better. I mean you you don't think you're going to, but actually you do. It's one of those subliminal things where you know you're you're taking it in without kind of consciously realising, but it does help to relax. It's about giving yourself permission, isn't it, really, to do these things for yourself and to to get off the the hamster wheel of caring and and think, hang on a minute, I need you know, I need to look after myself. Getting off that hamster wheel of caring, isn't it? And and thinking, no, I deserve this. I deserve I actually deserve this moment. This moment I deserve to sleep well, I deserve to eat well, I deserve to have time out in nature. Um, because for me, I mean, nature has become so important. I mean, I'm really lucky that I live in I can walk to the woods from my house and across fields to get there. And you know, there are 101 dog walkers who are all lovely and friendly, and so there's a bit of social interaction without having to put too much effort to just getting up into those woods and the smells and the sounds and the silence is just so restorative. It really is wonderful, and just going off with your own thoughts, and it's amazing actually how you know you've got a problem in your head, and you just sort of think, okay, I'll put that problem there, then I'll go off for a walk. And somehow, or sometimes happens when you're in the shower, or sometimes when you're driving, I've noticed as well that the solution comes to you and you can it's not so bad.
SPEAKER_00:No, it's not so bad, it's not so heavy. Yeah, exactly. You've been lucky because I think your daughter doesn't mind going out for walks or didn't. Um she loves it. My daughter did not. She did not want me to push her in a wheelchair. I think I've always that's something if I would go back to my former self, I would say, be a bit tougher. Take this time for yourself, and she has to come with you so that you get a leg stretch, you get your head space. She's fine, she will survive this. I was always like, okay, she doesn't want to go for a walk. I'll do exactly what she wants, you know. Yeah. I wish I'd been a bit more selfish and given myself that permission.
SPEAKER_01:And treated them like you know, the average joke as well.
SPEAKER_00:Come on, or we're going.
SPEAKER_01:Oh, it's so awful. She's so she's so disabled, life is such a struggle. She can she can choose what we watch on television, she can choose what we eat, she can choose where we go. Yeah. And I yes, I think, you know, it's a really important lesson for any child to say, actually, it's mummy's turn now. Exactly. And you've got to see that that I'm important, and you've got to see that other people need to come first sometimes, and it's fine, you know, a lot of the time you do come first, but you're not, I'm not here to put you on a pedestal. So I remember telling my daughter off a few times, you know, when I when I was with some family members down on the south coast, I wasn't, you know, really telling laying into or anything, but it was, you know, I was sort of saying no, don't don't do that because it's you know, and and the look I remember getting a bit of a look from my stepmother, and I said, Look, you know, I it life is going to be challenging enough without her being a brat on top. You know, um with I'm I'm trying to make she needs to be liked. People need to people need to like her. People, you know, she's gonna be working with carers, they they need to like who she is. So I'm I'm really glad I did that. Um I didn't do enough, but I I'm really glad that I showed her that actually, no, you're gonna sit through my television programme now because I've sat through quite enough C BBs and I'm sick of it, and I'm gonna watch Coronation Street now. So you know she got into Coronation Street, but anyway. So it's it's it's really important, isn't it? That they are treated in very many ways like the average child, so that they don't grow up to be unpleasant people.
SPEAKER_00:And that frees us up to have more time for ourselves, yeah. Which is submission.
SPEAKER_01:Yeah, and I I think I think I'm realising now, and the penny's finally dropped after 20 odd years, that I'm a better mother for it, I'm a better person, I'm a better wife, better friend, better than you. When you take time for yourself, yeah, and and having that time out. Um and my husband is he he does it, he swims in the river, so that's his thing. And he you know, he get he likes to go off on his bike sometimes, and and I think he's also come to the same conclusion that you know, going off and swimming in the river um with his friends or whatever it is, you know, he does he's also amateur dramatics, he's into um dram. So he goes off, you know, he he likes to be in a play all the time now because it's his time out, and I totally get that.
SPEAKER_00:It's not selfish and he's not doing anything wrong, it's actually healthier for you as a family.
SPEAKER_01:No, it is, exactly, exactly. And and the way our life can be quite intense and a bit of extreme is can be a bit extreme sometimes, then you know it it's even more important that we take those times out and do things that make us feel great because then we're better equipped to our roles at home. I think obviously, you know, caring, caring for anybody is tiring and you know it's worrying, it's frightening, and you do put yourself last, or certainly second to the person you're caring for. And those are the sort of aspects of of caring that you can't really get away from, um, and you don't really want to get away from them either, because you love the person and you want them to have the best level of care, and striking that balance is is important, but you know, you can't really do anything else about it, and you don't want to. But you know, there's so much about caring that is put on us and it giving uh gives us such a heavy burden that is entirely Highly unnecessary. I mean, so many service providers make life more difficult for us than than we than they need to. I mean, it's totally unnecessary. You know, when we spoke to a baby last month, you know, about uh fighting for things. I mean, he's a party leader and he's has he has to fight for his son. I know about that. I was yeah, I was too, but I found it quite comforting in a sort of you know, weird kind of way. I mean, I don't wish it on any parent, but you know, if he's having to fight, then you know, it is the system, it's utterly broken. And the way that service providers kind of make you feel as well, like you are begging, you've got to perform tricks in order to get things, you've got to become quite sort of Machiavellian and think of ways in which you can beat the system. All of that is entirely unnecessary, and we are we are made to feel we have to be grateful for you know living in a country which has stood up and said it will support our children. Well, no, that's we we we chose to have children in a country that would support them if they were born disabled. If they were born disabled, the country now has to support them. I don't think gratitude and begging um is very good for carers. Actually, gratitude, but gratitude for crumbs, I should say. I mean gratitude for life in general, yes, but you know, being being made to feel grateful for the crumbs that are offered to you, and being made to wait and being made to chase, and being made to you know, reapply the things over and over again. It's so destroying, and it has such a negative impact on our health and our ability to care. If they could just see past the end of their of their budgets or you know, past the end of their job roles, they might they might see that, and I find that incredibly depressing because it's really in 24 years it hasn't got any changes. No, uh and we've pushed and we've fought and we've tried and we've tried to change things and improve things and work in partnership and all the rest of it, but nothing changes. In fact, in many ways it's it's got worse, um, and that's the fact of it, and you know, that's governments, local governments, um, you know, tightening the purse strings, um, and and and they they're backed up by central government who likes to put it out that disable paper scrambles.
SPEAKER_00:I guess, like you said, that won't change, so we have to change the way we are able to cope.
SPEAKER_01:You can't change the wind, but you can adjust your sails, isn't it? Yeah, I think you things have to get a bit smarter and a bit harder.
SPEAKER_00:Um, but also, you know, if you're going through a stressful situation with a service provider, don't do it alone. No, because that's when it really affects your health. Yes. You must tell people whether that's uh your GP or a friend or neighbor, you must talk it through with somebody, don't hold it all in. And do things like write an email but don't send it, so get your anger out, just get it gone. Yeah, don't send it, just leave it, and then write the write a different email. Because if you if you're denied a service or a service is taking too long to be given to you, and then you get angry back with um they get angry but you know, it doesn't do you any favours. No, you've got to let some of that tension going. You know, this is really childish. I have a pen. This is brown and it has a plastic pillow on the end of it. I love getting that out. Let's all sign something with the poop pen.
SPEAKER_01:I'm such a child at sending them read emails and I click sending a guy, yeah.
SPEAKER_00:Out, ow. Yeah, um we've got to find some different coping mechanisms. I do I do say to people now at the top end of the email, um, I need an answer by this date, or I'm under stress because this has happened. I need to remind you that I'm a single parent. I've kind of put the headlines way up there so that they can go in a situation that I'm in. I don't just okay, thanks. I'll wait for your answer I go. Um I've been unwell. I'm a single parent. We've been waiting a year for this from blah blah blah just to try and force a little bit more action quicker. I don't know if that helps anybody else. But yeah, those are the things that I would say. Maybe you don't want to poop pen like I've got you that bring you to poop.
SPEAKER_01:Thank you for spending this time with us on Let's take it always comfortable, but it is powerful. And we hope that it gives you permission to prioritize yourself in a way that we didn't know how two years ago. You matter. Your helping matters, and taking care of yourself as part of taking care of your family. We'll see you next time until then, please remove you remind us for the next episode of Let's Take her. And we're here in between. Please write to us. Uh let's take care of BFTF.org.uk. Thank you.
