Latest / Tom's Hirschsprung's Podcast / Episode 67 - With Faye Roberts (Part 2)

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Episode 67 - With Faye Roberts (Part 2) · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshprun's Podcast, where I provide
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Speaker 1: a look into the remarkable experiences of the most inspiring
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Speaker 1: people around Hirshprung's disease and sports. Hello and welcome to
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Speaker 1: episode sixty seven of Tom's Hirshbrun's Podcast, where I am
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Speaker 1: once again joined by Fay Roberts. We're going to do
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Speaker 1: part two of your episode part one very much going
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Speaker 1: through your entire story from the beginning right through to
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Speaker 1: present day, and this episode we're going to talk about
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Speaker 1: a little bit a little bit different, So we're going
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Speaker 1: to talk about the impact of the Hirshbrungs. We're going
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Speaker 1: to talk about a little bit of plans for the
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Speaker 1: future that we've been talking about a little bit as well,
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Speaker 1: and of course dogs. So Faye again, welcome, welcome back
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Speaker 1: to the podcast. Thank you well, thanks again so much
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Speaker 1: for coming on. And I know you wanted to talk
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Speaker 1: a little bit more about the impact of Hirshbrungs for you,
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Speaker 1: and we talked a little bit about it in the
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Speaker 1: first episode. Would you like to elaborate a little bit
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Speaker 1: as well.
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Speaker 2: Yeah, so, I guess the impact of hirshbrings as a
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Speaker 2: child if we separate child to adult. Yes, I had
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Speaker 2: an education, but I would say it was limited and
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Speaker 2: I still managed to go to school. I still had
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Speaker 2: some education, you know, enough to do diploma, a couple
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Speaker 2: of diplomas actually in college and then moving on to
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Speaker 2: do a social work degree. You know, I find I
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Speaker 2: find studying and concentration for long periods of time difficult,
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Speaker 2: but it's it's definitely doable, you know, put your mind
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Speaker 2: to anything, it's definitely doable. Career wise, as as an
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Speaker 2: older adult now it's still difficult. Mm hmm. It's still
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Speaker 2: very much a challenge. But I think as a society
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Speaker 2: and within management level, we are getting better with reasonable adjustments.
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Speaker 2: You know, the government Access to work scheme which is
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Speaker 2: really beneficial. They're easy, just make an application, they assess you.
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Speaker 2: And so for me sitting at a desk or all
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Speaker 2: day and lack of coll because of all the surgery
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Speaker 2: particuarly twenty nineteen, I've got no care at all, and
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Speaker 2: so acts sort of referring to access to work from
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Speaker 2: the government, they supplied me with a standing up desk
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Speaker 2: and a chair, a decent chair to sit at all day.
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Speaker 2: So that's that's real positive that you know, as sight
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Speaker 2: seeing as a government, we're getting better, we are getting
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Speaker 2: much much better. And I guess, I guess out in
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Speaker 2: the community from an impact of hers brands that's touch
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Speaker 2: upon disabled toilets, which is to be and my bonnet,
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Speaker 2: and they're not great at all. They don't accommodate people
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Speaker 2: with stonemas or an ace for that matter. And you know,
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Speaker 2: if I would have real, real struggle to do to
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Speaker 2: flush use my ace and to the flesh out of
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Speaker 2: my battle out and about the community, it's really really difficult.
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Speaker 2: There's lack of there's no shelf and disabled toilet sable
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Speaker 2: toilets are absolutely disgusting nine times out of ten. Yeah,
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Speaker 2: they're just not great. And it's disabled toilets for Stoneers
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Speaker 2: that doesn't have to cost the earth. It's literally a hawk,
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Speaker 2: a shelf and a mirror. That's it. You know, we're
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Speaker 2: talking fifty quid, yet we're not talking thousands. And there's
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Speaker 2: just there's just a lack of and I want to
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Speaker 2: say a lack of responsibility from from these public toilets.
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Speaker 2: And yeah, it's a real beer upon it. So I'm
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Speaker 2: just literally thinking of the whole life circle, if you like,
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Speaker 2: and how it impacts from a Herschman's point of view. So, yeah,
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Speaker 2: work is definitely doable. Access in the community is doable,
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Speaker 2: but you've got to search for a decent toilet or
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Speaker 2: plan your day around eating or not eating. In my case,
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Speaker 2: relationships should be talking about relationships. I've never had an
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Speaker 2: issue really, you know, even as a teenager young twenties,
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Speaker 2: I had a relationship and I had a stonema by then.
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Speaker 2: Actually it was never an issue whatsoever. I lived my
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Speaker 2: twenties team age, teenage years and twenties. I went out
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Speaker 2: and I got absolutely paralytic on a number of occasions. Yeah,
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Speaker 2: given my parents a bort of extra gray hairs, and
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Speaker 2: so we definitely lived my teenage years mainly throughout alcohol
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Speaker 2: on a weekend. When I went to college, it was
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Speaker 2: so that side of things is definitely normal. I would
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Speaker 2: say alcohol. I think like my hangovers were Whether I
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Speaker 2: drank more than my friends, I'm not sure, but anyway,
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Speaker 2: remember no, I think my hangovers lasted longer and were
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Speaker 2: more intense, and so hangovers the next day, especially if
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Speaker 2: you're vomiting, I think it's worse than the average Joe
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Speaker 2: blocks and it definitely lasted longer. Yeah, you know. Other
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Speaker 2: than that, you know, I lived my life as any
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Speaker 2: other normal twenty year old. I did a skydive, I
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Speaker 2: went on holidays, I did long haul holidays, even traveled
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Speaker 2: to the Maldives, and it was fine. I just you know,
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Speaker 2: the traveling to the Maldives was like eighteen hours because
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Speaker 2: we had a bit to do a stopover in Turkey.
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Speaker 2: So I just managed what.
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Speaker 1: Sorry, there you go on, go on.
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Speaker 2: And so I just managed my diet a couple of
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Speaker 2: days before, really light meals and just literally light snacks
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Speaker 2: throughout the flight rather than a big meal. And because
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Speaker 2: for me, I would need to have flushed on the flight,
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Speaker 2: and that's no girl, No, no, we don't want to
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Speaker 2: be doing that.
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Speaker 1: I can't imagine they had Stonma friendly toilets, you know,
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Speaker 1: several thousand feet.
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Speaker 2: In the air. No, no, not at alls. We don't
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Speaker 2: want to be doing that. But it's doable. Yeah, it
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Speaker 2: is absolutely doable.
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Speaker 1: I think that's really good to hear, especially I have
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Speaker 1: a lot of listeners who are new Ish moms and
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Speaker 1: dads who maybe have children who are you know, babies
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Speaker 1: or certainly children under the age of four or five,
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Speaker 1: and to know that in Part one obviously going through
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Speaker 1: everything that you went through, you still live quote unquote
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Speaker 1: normal life is fantastic to hear. And you know the
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Speaker 1: fact you can still go out drinking, you can still
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Speaker 1: you go on long haul flights. You can go. But
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Speaker 1: it's like you said, it's just preparation being really really
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Speaker 1: important and you just have to plan ahead more than
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Speaker 1: the average person.
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Speaker 2: I guess, yeah, yeah, absolutely, top tip. Share you still
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Speaker 2: supplies throughout all the suitcases and even better, put them
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Speaker 2: in your luggage and say you have knowledge with you, yes,
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Speaker 2: and yeah, I'll take extra.
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Speaker 1: So another thing that we share a mutual love, I guess,
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Speaker 1: is of dogs. I've talked a little bit on this
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Speaker 1: podcast before about my dog by dog that I look after,
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Speaker 1: a spaniel, a very energetic spaniel who loves running and
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Speaker 1: tennis balls mainly. But you are also a lover of
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Speaker 1: dogs as well. Would you like to share a little
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Speaker 1: bit about your dog?
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Speaker 2: I am, yeah, so I have. I've always had a
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Speaker 2: dog as a child, grown up, always had a dog
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Speaker 2: or dogs, and as the family within the family home
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Speaker 2: and growing up by you know, looking for walks and
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Speaker 2: and did the basic care of dogs as as I
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Speaker 2: grew up. And my love for Spaniels. Coca Spaniels came
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Speaker 2: as my grandmother had two Cox Spanuels who absolutely mental
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Speaker 2: that they were berserk, and they served so clever. So
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Speaker 2: I always said, you know, when I've moved out, I
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Speaker 2: want my own coc Spaniel. And yeah, I've always had
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Speaker 2: a real passion and love for dogs.
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Speaker 1: Really.
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Speaker 2: I went to do a diploma and animal car I'm
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Speaker 2: leaving school, and then I did dog reaming thereafter, and
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Speaker 2: I set up the business for about ten years, which
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Speaker 2: was you know, we did really well actually, and and
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Speaker 2: then I met my husband and I moved about half
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Speaker 2: an hour away from my hometown to my husband's new
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Speaker 2: property as he he just bought it, so it made
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Speaker 2: sense for me to move down here. And I found
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Speaker 2: that I was just traveling half an hour forty minutes
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Speaker 2: just a green one dog, and so I, yeah, seize
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Speaker 2: the business. Really, when I look back, I yeah, regret it,
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Speaker 2: but it is what it is. And then obviously I
11:32
Speaker 2: went to do my social degree middle life crisis. Yeah,
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Speaker 2: but still dogs has been my passion and my interest,
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Speaker 2: my everything. Really. You know, when I was in and
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Speaker 2: out of hospital, even on my day releases, my mom
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Speaker 2: would bring the family dog down for it to sit
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Speaker 2: on my knee and she was only a little laser
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Speaker 2: rapsodes so when yeah, yeah, shared on McDonald's chips and
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Speaker 2: what not, and yeah, so dogs has always been a
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Speaker 2: massive part of my life. Really since one of the
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Speaker 2: last year I have done my scent detection instructors course.
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Speaker 2: My hope and my dream is to probably leave social
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Speaker 2: work altogether. I'm focused on dog training with hydrotherapy for dogs. Yeah,
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Speaker 2: that's the the ten year goal if you like, because
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Speaker 2: it's a lot of money to set it up. Yeah,
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Speaker 2: I watched this space in that sense.
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Speaker 1: Well, that would be fantastic. And I know that your dog,
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Speaker 1: Mabel is also a therapy dog. She is.
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Speaker 2: So Mabel is three years of age now and I
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Speaker 2: got assessed at ten months old, which is they need
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Speaker 2: to be ten months to be assessed. Basically some really
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Speaker 2: good socializing and basic obedience training and yeah, and as
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Speaker 2: long as they're confident with loud noises, busy environments. They
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Speaker 2: like humans first and foremost. Yeah, it's quite easy to
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Speaker 2: train your dog to be a therapy dog. Really, they
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Speaker 2: needed they need to be well socialized. I can't empathize
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Speaker 2: that enough. They need to be well well socialized and yeah,
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Speaker 2: she's Mabel is my absolute world. She is. She's spoilt, rotten,
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Speaker 2: Yeah she's. And I guess you know, even during the
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Speaker 2: pancreatic attacks, and she knows. She will know I'm having
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Speaker 2: a bad day before I even realize. She'll come and
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Speaker 2: sit sit next to me, or she'll come and sniff
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Speaker 2: my neck, which tells me that my blood shogs are dropping. Well,
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Speaker 2: yeah she is. She is such a special dog and
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Speaker 2: real her intelligence is just it's off for scale.
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Speaker 1: Just yeah, that's fantastic. And I think again, I just
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Speaker 1: go back to sort of spaniel. I look after I
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Speaker 1: notice that there are a lot of spaniels that are
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Speaker 1: very very intelligent. They do notice things, like you said before,
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Speaker 1: you do. They notice that if you know, if you're
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Speaker 1: not feeling too well, they'll come and sit right next
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Speaker 1: to you or squish right next to you. They'll notice
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Speaker 1: times as well. Is one thing. I mean, my dog
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Speaker 1: is a big lover of football, and she'll know it's
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Speaker 1: three o'clock when she'll sit by the telly at five
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Speaker 1: to three waiting for the games to start. So she'll
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Speaker 1: come in from the garden and wait for the games
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Speaker 1: to start. But yes, they are. They are very very intelligent,
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Speaker 1: and I think there's there's quite a few people who
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Speaker 1: listen that there are big lovers of dogs that will
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Speaker 1: will very much share your sentiment on that.
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Speaker 2: Yeah, so at three o'clock, the sun will be shining
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Speaker 2: into your house at a certain point, and that creates
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Speaker 2: a special odor. So it's not the time, it's the
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Speaker 2: odor that they can read.
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Speaker 1: Ah, I didn't know that. I just thought that, you know,
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Speaker 1: soccer Saturday comes on. She hears soccer Saturday and she goes, yeah,
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Speaker 1: I love I love this. I'll sit here in front
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Speaker 1: of it.
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Speaker 2: It should be associating the sound of soccer and where
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Speaker 2: the sun comes through your house will have a specific odor.
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Speaker 1: I didn't know that. This is what I love doing
15:38
Speaker 1: these podcasts. I learned so much about so many things.
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Speaker 2: Yeah, yeah, that's.
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Speaker 1: Fantastic and just sort of the final So I guess
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Speaker 1: five ten minutes of this, of this, of this one
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Speaker 1: of this podcast. We both attended the Hirshbrung's conference. Would
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Speaker 1: that be a few weeks ago now, of the twelfth
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Speaker 1: of February, And I think there was there's a lot
16:09
Speaker 1: of speakers and a lot of useful information just as
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Speaker 1: a whole I mean, I know I've summed it up
16:19
Speaker 1: a little bit on my Instagram, but how would you
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Speaker 1: sort of sum up the whole the whole day.
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Speaker 2: Yeah, it was very beneficial and it was lovely to
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Speaker 2: come into a room together for more walks of life,
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Speaker 2: but with one common theme of Hirshbrungs, whether it's be
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Speaker 2: a parent or a child, grandchild, whatever, and yeah, and
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Speaker 2: there is the there was a clear difference, if you like,
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Speaker 2: in there were there was people in that room that
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Speaker 2: had had the diagnosed of Hershbrungs, being through the fight
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Speaker 2: to get to the other side and got the T
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Speaker 2: shirt if you like, and actually doing really really well.
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Speaker 2: And there were also a small group that were it
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Speaker 2: was almost that that Robiting had like feeling and I
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Speaker 2: just for me, it was it showed that actually we
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Speaker 2: are lacking some form of support group for Hershbrungs. And
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Speaker 2: again coming from North Wales but from the Northwest, you know,
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Speaker 2: we're in the middle of the country and it needs
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Speaker 2: to be a nationwide support for kit and parents who
17:43
Speaker 2: are going through the diagnosis stuff of Hirshbrungs and how
17:47
Speaker 2: to manage it, whether that's some surgery or wash out
17:51
Speaker 2: or fiber controled diet, whatever that may look like for
17:56
Speaker 2: that individual. It's yeah, it's just about wrapping your arms
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Speaker 2: around these people who are completely lost in the word
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Speaker 2: of the Hirshbruns diagnosis. And that's something definitely that we're
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Speaker 2: having conversations with sickly willed hay to be able to
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Speaker 2: open up some form of support group, whether that's you know,
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Speaker 2: two events a year, whether we go and have a
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Speaker 2: picnic in a park in the Northwest, which is you know,
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Speaker 2: the middle of the country. Yeah, watch this space.
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Speaker 1: Yeah, yeah, I think the one sense I got is
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Speaker 1: it's very much the same that the if we if
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Speaker 1: we take I know, the whole room wasn't the whole community.
18:42
Speaker 1: There are lots of people that I know that you
18:44
Speaker 1: couldn't attend or didn't attend for one reason or another.
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Speaker 1: But the general consensus in the room was that, you know,
18:52
Speaker 1: there's lots of good things happening. There's lots of the
18:56
Speaker 1: stories and experiences being shared, but almost crying out for
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Speaker 1: a charity. And I know we've mentioned a little bit
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Speaker 1: before about Chance and about the great work that was
19:11
Speaker 1: done there, and now that's kind of gone and it's
19:14
Speaker 1: left a bit of a void, and it's all about Okay,
19:20
Speaker 1: everybody sort of wants or everybody has spoken to want
19:24
Speaker 1: something there, and it's now really a case of okay,
19:31
Speaker 1: what do we do and how do we move it forward.
19:34
Speaker 1: I know you've mentioned there just about you know, trying
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Speaker 1: to start off simple and couple of thems a year
19:44
Speaker 1: in a park, you know, you know, not looking at
19:47
Speaker 1: things that cost the earth. We're not looking at hiring
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Speaker 1: out great big conference centers or like they had an
19:53
Speaker 1: old hay and hospitals and and things like that. But
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Speaker 1: I think having that sense of of community and I
20:02
Speaker 1: think we both know that having a community online is
20:06
Speaker 1: different to having a community face to face, and I
20:10
Speaker 1: think having that the online community I think is growing
20:14
Speaker 1: and is going well, but having that face to face
20:18
Speaker 1: meet up I think is something that's really really important.
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Speaker 2: Yeah, to watch the space. We are definitely having conversations
20:28
Speaker 2: and I guess if anyone's got any suggestions ideas about
20:34
Speaker 2: setting up a little bit of a support group with us,
20:37
Speaker 2: feel free to contact with Tom.
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Speaker 1: And I mean there is a kind of Facebook group
20:46
Speaker 1: that has been set up by Ellie who's there at
20:50
Speaker 1: the conference, and she's very good at social media, she's
20:53
Speaker 1: way better than I am, so she said it all up.
20:57
Speaker 1: But yeah, so if anybody wants to join group, then
21:02
Speaker 1: feel free as people sharing some stories, sharing some ideas,
21:05
Speaker 1: and if you have any ideas. I mean, I think
21:08
Speaker 1: we've talked before as well and were kind of open
21:12
Speaker 1: to all ideas. I mean, there isn't really a kind
21:16
Speaker 1: of I guess they're sort of set in stone structure
21:23
Speaker 1: or it's at the very preliminary stages. So I think
21:28
Speaker 1: if anybody wants to help coordinate, help to help to
21:36
Speaker 1: facilitate that. But I think, like we've said, having that
21:40
Speaker 1: one singular voice I think would be spokesperson, chairperson, whatever
21:47
Speaker 1: it might be, I think would be really beneficial. But
21:51
Speaker 1: it doesn't necessarily have to be a charity, I don't think,
21:54
Speaker 1: does it.
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Speaker 2: No, No, definitely, just as literally a support grip. We
21:58
Speaker 2: can do super bands, yeah, you know within mid Wales,
22:03
Speaker 2: mid UK. Well, we can do is zoom calls.
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Speaker 1: Yes, that's another really good idea.
22:11
Speaker 2: For two hours and we get a guest speaker to
22:13
Speaker 2: come in for one hour and and we we chat
22:17
Speaker 2: and support each other the last hour. That could potentially
22:23
Speaker 2: work or a make sure of both.
22:24
Speaker 1: Yeah, I know you said you've done a little bit
22:27
Speaker 1: in terms of the Zoom support groups and you found
22:29
Speaker 1: it really beneficial. Yeah, so I think, yeah, something like that.
22:36
Speaker 1: You know, even if we did just as a rough
22:38
Speaker 1: idea of zoom calls once a month and events twice
22:42
Speaker 1: a year. I'm not saying it has to be, but
22:44
Speaker 1: just as a rough guide something like that, I think,
22:50
Speaker 1: because I think the need is very much there, isn't it.
22:53
Speaker 2: Yeah, yeah, definitely, So, yeah, anyone got the ideas suggestions
22:59
Speaker 2: equally if if you are interested in that, let's see
23:02
Speaker 2: what if there is any interest, and you know, we
23:04
Speaker 2: could just be waffling on here and no one, no
23:09
Speaker 2: one really wants to join in. So yeah, if you
23:12
Speaker 2: are interested in either event a zoom call or event
23:17
Speaker 2: in a park with picnic, bring the family, bring the kids. Yeah,
23:23
Speaker 2: in the summer, that'd be nice. Yeah, any interest, let
23:27
Speaker 2: us know.
23:29
Speaker 1: Fantastic. No, I think that's that's wonderful and a great,
23:32
Speaker 1: great sentiment to finish on. I just want to say
23:35
Speaker 1: thank you so much for coming on to do your
23:38
Speaker 1: your second part, and it's a little bit shorter than
23:41
Speaker 1: the first part, but thank you ever so much for
23:44
Speaker 1: your time. And yeah, hopefully well the next time we meet,
23:48
Speaker 1: we'll have a we'll have a support group. We'll have
23:51
Speaker 1: something up and running well.
23:54
Speaker 2: Perfect.
23:54
Speaker 1: Thank you very much everyone, thank you, thank you, thank
24:00
Speaker 1: you for listening to the podcast. Find us on Instagram
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