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Transcript

00:00:00In this week’s episode of Ordinary Life, Kitty recorded this outside of Coast Access Radio

00:00:05studios and had some issues getting a clear line to Gibraltar.

00:00:09That’s fair enough.

00:00:10The sound quality is not very good, however the content is and if you can listen past

00:00:15the audio quality you will still enjoy this week’s episode of Ordinary Life presented

00:00:21by Kitty Fitton.

00:00:22Kia Ora and hi, this is Kitty Fitton and this is Ordinary Life on Coast Access Radio 104.7FM

00:00:29in Kāpiti in Horowhenua from beautiful New Zealand.

00:00:33And this week it’s a bit of an international affair as we’re going to talk to the wonderful

00:00:39Ali Shaw who lives in Gibraltar.

00:00:42So apologies for the sound, we’re doing our very best with international kind of stuff

00:00:50and hello Alison.

00:00:51Hello, how is everybody in New Zealand?

00:00:55I think we’re all pretty good at the moment, it’s coming into spring, we’ve had a pretty,

00:01:03you know it’s been freezing and the weather’s now picking up.

00:01:07What’s it like in Gibraltar?

00:01:10It’s absolutely gorgeous.

00:01:12We’ve had a horrendous heatwave which I thought was fantastic but everybody complained about

00:01:19and we’re just moving into autumn.

00:01:21Is it cold in Gibraltar in autumn?

00:01:26Not really, autumn’s still sort of early 20s, late sort of teens so can’t complain about

00:01:37that.

00:01:38That’s great.

00:01:39I wanted to talk to you because obviously Alison and I go back, oh, at some time don’t

00:01:47we Alison?

00:01:48We never, yes we do, a long, long, long, long time.

00:01:54And I was thinking about interesting people and I can’t think of anybody who’s much more

00:01:57interesting than you really because you taught me so many wonderful things and I still live

00:02:04by and one of them was If in doubt, Cook It on 180.

00:02:08Always.

00:02:09Always and you’re never too young to start moisturising.

00:02:13Absolutely.

00:02:14There was a third thing but I can’t, I can never remember what that was.

00:02:20I can’t remember the third thing but I’ve lived by the other two.

00:02:24Good.

00:02:25But we also shared, you had some medical trouble when I knew you back in the day and I believe

00:02:36they’ve continued to dog you, haven’t you?

00:02:39So would you mind telling people what it is you have to live with?

00:02:44Yeah, I’ve had quite a few medical problems over the years.

00:02:47Most have been dealt with by surgery but a half years ago I was diagnosed with Crohn’s

00:02:54disease so I have to live with that daily.

00:02:58I had the majority of my large bowel removed and excuse me, sorry, I have chronic diarrhoea

00:03:08so I have to spend my life going from toilet to toilet.

00:03:13I was going to say, do you want to explain what Crohn’s disease is?

00:03:17Crohn’s disease is inflammation of the bowel and you can get blockages.

00:03:24It affects lots of people in so many different ways.

00:03:28Some people have to have surgery, have to have the whole bowel removed and a bag put

00:03:33in which I haven’t as yet.

00:03:36Some people don’t have to have surgery and can just manage with medication and change

00:03:43of diet.

00:03:44Others like myself have part of the bowel removed but then as I say you’re constantly

00:03:51worried about where you are, where’s the next toilet, how far can I go, how long can I sit

00:03:58in a car for, you know, that sort of thing.

00:04:01Yes, it’s interesting, my mum had Crohn’s disease growing up and she ended up with the

00:04:10bag that you talk about that is called an ileostomy and I do put that down to me having

00:04:17such a bit of a, some people would call it a thick sense of humour but I just call it

00:04:22like real life and coping sense of humour about all that kind of stuff.

00:04:28So how come you had your bowel removed but they left you, you know, without a bag?

00:04:35Well, because they only removed part of the bowel they didn’t need to have a bag put in.

00:04:42Right.

00:04:43So the food does go in and it does come out.

00:04:47It doesn’t come out like everybody else because what happens with the large bowel, the largest

00:04:55bowel is where all the food waste is taken and all the water is extracted from it to

00:05:02make it solid.

00:05:04So when you have that part of the bowel removed of course when you go to the toilet your motions

00:05:09are no longer solid.

00:05:10Yes.

00:05:11So you live with this as chronic diarrhoea and you don’t have an awful lot of control.

00:05:19So it’s as I say a case of oh you need to run to the toilet and when you need to go

00:05:25you have to go which I believe a lot of people are affected like that.

00:05:30I don’t know why they decided to leave the rest of the bowel and not give me a bag but

00:05:36that was the surgeon’s choice at the time so, you know, I’m not a doctor I don’t know

00:05:42why they decided that.

00:05:43I mean I think it’s best to leave what they can because they talked about doing that to

00:05:51my mum and they did for many many years.

00:05:54I know she lived with only part of a bowel until she basically told them she couldn’t

00:06:00do it anymore but I mean she was probably she got sick when she was about 25, 26 and

00:06:10it wasn’t until she was nearly 40 that they put the bag on and to explain you know when

00:06:16you get the bag you end up they pull part of your bowel through and they create what’s

00:06:21called a stoma so you end up having, yeah you have that through and yeah it requires

00:06:28quite a lot of medical care as well though because you have to clean it regularly and

00:06:32it’s a bit of a pain.

00:06:33Yeah I think it makes you more open to infection I think and that’s probably why it’s so important

00:06:40to try to leave that as long as we possibly can so maybe that’s why they didn’t take

00:06:46it all out completely so.

00:06:48So how do you manage like day to day because I mean I remember my mum literally couldn’t

00:06:53even get to the corner shop and back sometimes without having an accident for one of the

00:06:59better things.

00:07:00Yeah I know where every public toilet is I have an access key to every disabled toilet

00:07:09in Gibraltar we do have quite a lot I am very careful about what I wear, I wear leggings

00:07:15during the winter and cycling shorts during the spring, summer and autumn in case I do

00:07:22have an accident so but my rooms are planned so I’m always walking past the toilet I have

00:07:29a disabled, not a disabled badge like people have like a blue badge for the car or anything

00:07:36I have a little badge for our department of equality and the lanyard which shows I have

00:07:42an invisible disability and with that if I need to you know lots of bars and restaurants

00:07:50I don’t know about in New Zealand but here lots of bars and restaurants don’t allow you

00:07:55to use their facilities unless you are a paying customer but because I have a disability I

00:08:01just go into it if I need to and I can’t get to the closest toilet I run into a bar or

00:08:08restaurant show them my badge and say I have a disability please can I use your toilet

00:08:13and nobody has said no they have let me in they have let me use their facilities everybody

00:08:19has been great so that’s ok.

00:08:23I have had a couple of accidents my surgeon, my consultant sorry not the surgeon, the consultant

00:08:32makes fun of it we do have a really good laugh about where she would wear clothes that are

00:08:38brown rather than any other colour I tend to wear black which is just as good as wearing

00:08:45brown so.

00:08:46I do know that my mum her bag would sometimes explode if she had eaten something that she

00:08:54shouldn’t have done or even if she hadn’t sometimes if she was a bit gaseous and she

00:09:00would be in bed and she had this clip like a food bag clip that went on the end and if

00:09:07anything happened or hadn’t been closed properly she said she would wake up and she would feel

00:09:12this wetness and she would think oh well I said poo instead of the other word and then

00:09:19she would go literally yes like everywhere and I mean people might think it sounds you

00:09:30know it might be oh this is terrible I can’t believe you are talking about this but this

00:09:33is real life for thousands of people and it’s their reality every day you know.

00:09:39It is it affects so many people and little things that they don’t realise is if you do

00:09:46have wind or gas you can’t just pass wind if you’re walking through the streets like

00:09:53anybody else would because you know if you pass wind you aren’t going to have an accident

00:10:00so you can only run to a toilet if you need to pass wind so that’s I mean we do as I say

00:10:08we do make jokes about that.

00:10:10It’s not too obvious because it’s pretty grim.

00:10:13You have to.

00:10:14You have to yeah I do I laugh about it the trouble with living in such a warm country

00:10:20is that most people like during the summer you are wearing summer clothes during the

00:10:27winter you can get away with whatever you’re wearing and if you do have an accident it

00:10:32can be well hidden but during the summer there’s nowhere to hide if you’re wearing a short

00:10:38summer dress which is as I say why I wear cycling shorts under my dresses or my skirt.

00:10:45So I mean do you have to wear special pants or anything or if you don’t mind me asking.

00:10:51No no I haven’t thought about that yet and I don’t see why I really think I’m at that

00:10:59stage where maybe this should start prescribing me adult nappies because you can get adult

00:11:05nappies or adult pull ups and a lot of the elderly people here are prescribed then but

00:11:13as yet they’ve told me that no I don’t need them yet but if I get to that stage then yes

00:11:20I probably will have to wear a nappy but again I’ll just make fun of it so you know me that’s

00:11:28the way I am.

00:11:29Indeed I mean how many people does it affect do you know?

00:11:35I haven’t checked it out but I think it’s something really high like one in ten people

00:11:40or something like that.

00:11:41Yeah it does affect a lot.

00:11:42So is there a comment?

00:11:43Yeah it is.

00:11:44Yeah but as you know with your mum and with me it affects people in different ways.

00:11:52Yeah.

00:11:53So some people never have surgery, some people have infusions for medication.

00:11:59A lot of the medication they’ve tried me on have reacted too badly so I haven’t been controlled

00:12:06by medication.

00:12:07There’s famous people on the TV in the UK which I don’t know if you get the shows in

00:12:16New Zealand.

00:12:17Yeah.

00:12:18Do you get Emmerdale?

00:12:19Oh I think they do have Emmerdale.

00:12:22Yeah.

00:12:23Well if they have Emmerdale then the actor who plays Kane Dingle he’s had Crohn’s disease

00:12:29since he was a teenager.

00:12:31Yeah.

00:12:32So he’s managed well and on our Strictly Come Dancing show one of the dancers, I don’t know

00:12:40how she manages to dance, she’s an amazing dancer but she has it as well and she’s in

00:12:49and out of hospital it affects her really really badly.

00:12:52I’ve only been in hospital twice once to have part of the bowel removed and the second time

00:12:59was when I had a reaction to the medication that they were trying me on.

00:13:04So other than that I have been very lucky considering how some people affect.

00:13:10So I can’t really complain too much.

00:13:14No because I know it’s a very hidden disease because people feel ashamed and they feel

00:13:21embarrassed talking about it but it always makes me kind of cross that people have to

00:13:27feel, you know, think they have to feel that way.

00:13:30I don’t know about you but it just makes me kind of angry that people think they have

00:13:34to hide stuff because it might not fit in with societal norms.

00:13:40Yeah it does and people do need to talk about it more and I know a lot of people especially

00:13:47you know coming from the UK as did I that people don’t like talking about things like

00:13:53bowel movements, oh no you can’t but Gibraltar is slightly different.

00:14:00Everybody tells everybody their medical problems.

00:14:02So here, we know everything about just about anybody.

00:14:09Nobody has any secrets.

00:14:12It’s like living in a village where you know what’s going on with everybody but it’s a

00:14:20lot bigger than a village with like 30,000 people but you’re walking down the street

00:14:24and you go oh I know that person’s got so and so, I know that person’s got so and so

00:14:29and you know the people that have got Crohn’s, you know the ones that have had bags put in

00:14:34the bowel removed and a bag and everybody like talks to everybody.

00:14:40It’s just so funny and we talk about bowel movements all the time you know so it’s good

00:14:47here, it’s a lot better here than in the UK where nobody would discuss anything like that.

00:14:53Yeah I mean New Zealand’s a bit strange like that I don’t know I mean we all sort of, the

00:14:58Carpenty Coast where I live and where we’re sent to and Hone and Horifeno are quite small

00:15:04in comparison probably to Gibraltar size I reckon and although we are officially part

00:15:09of the Greater Wellington region nobody likes to actually you know be part of Wellington

00:15:15and we call ourselves you know the Carpenty Coasters and stuff and you know and it’s very

00:15:19strange because when I first moved here I learned about the Carpenty Check where you

00:15:24always have to look over your shoulder before you talk about anyone you know because they

00:15:28could be sat next to you.

00:15:30Yeah.

00:15:31I thought it’s a bit, it sounds quite similar in that respect.

00:15:35I mean obviously only always saying nice things.

00:15:40The thing with Gibraltar is when you’re speaking to somebody is the chances are they’re probably

00:15:47related to the next person, there’s such big families here and all the extended families

00:15:55live here in such a small place.

00:15:57Oh yeah.

00:15:58Yeah I get you.

00:15:59You say oh my doctor is so and so and somebody else will say oh I went to school with him

00:16:06or oh he’s my cousin.

00:16:08It’s like living in New Zealand yeah I mean there’s two degrees of separation they say

00:16:13between everybody and no matter who you speak to here somebody will know somebody but yeah

00:16:19it’s and it’s interesting what you say about like knowing people with the same disease

00:16:26because I’m often told Parkinson’s is very very rare in people and you know early onset

00:16:32Parkinson’s is so rare and it doesn’t often happen and yet I can name about one two three

00:16:40about five people in my local area alone that have got early onset Parkinson’s which is

00:16:46like hmm I just blew that out of the water.

00:16:50Yeah that would be usual anywhere but places like this they’re the same there’s so many

00:16:57people with Crohn’s disease there’s so many people with lots of other invisible disabilities

00:17:03we’ve got a lot of people with MS we’ve got a lot of people with dementia but that you

00:17:09do know that there are so many people here with so many different things but everybody

00:17:15talks about it.

00:17:16Two things one what advice would you give to somebody who’s listening and they’ve got

00:17:20Crohn’s and they feel embarrassed and you know ashamed of it?

00:17:25I’d just say don’t be ashamed of it just learn that it’s not your fault it’s not anything

00:17:34you’ve done it’s just one of those things that happen try to talk to somebody about

00:17:39it there’s lots of organizations I know we have organizations here there are places on

00:17:45the internet you can get information from don’t be embarrassed to talk about going to

00:17:51the toilet don’t be embarrassed going into the toilet if there are other people in there

00:17:57sometimes I just shout out if I’m in the supermarket and I need to go to the toilet I’ll just dump

00:18:04my trolley run go to the toilet and if there’s anybody in there I just say I’m sorry I’ve

00:18:09got Crohn’s live with it and people just accept it so it’s just accepting it yourself first

00:18:20and not being embarrassed about it how it feels because one of the things people don’t

00:18:26know about Crohn’s disease is that one of the worst things about it is the fatigue that

00:18:33comes with it I mean you know me I could sleep anytime anywhere but now with the Crohn’s

00:18:41I could happily sleep for 24 hours a day except obviously I would need to go to the toilet

00:18:47at some point during that time but I don’t realize that there are other things as well

00:18:53as the Crohn’s not just running to the toilet and being worried about having an accident

00:18:59on the street or anything like that but where these people that do have Crohn’s disease

00:19:05aren’t going to be able to lift things carry a lot of things stand up for a long time because

00:19:13sometimes if you feel you need to go to the toilet it’s easier to be sitting down so you

00:19:20know if you’re on a bus give them your seat let them sit down so they can feel more comfortable

00:19:27if there’s a bench they can sit on but because nobody can see it because you don’t have a

00:19:32big badge on you that says oh I’ve got Crohn’s disease say to somebody excuse me do you mind

00:19:38if I just sit down for five minutes I’ve got really bad stomach cramps or I feel really

00:19:43really tired I have Crohn’s disease don’t be ashamed of it there’s so many people have

00:19:49it just you know accept it it’s part of life.

00:19:53Do you see it as a disability?

00:19:56It is a disability in that in certain ways I’m now trapped in Gibraltar because I’m having

00:20:08trouble getting travel insurance it’s crazy because a lot of the insurance companies will

00:20:15insure people that have had cancer but yet for Crohn’s disease they’re like no because

00:20:22the trouble with Crohn’s disease I could have a flare-up tomorrow and being back in hospital

00:20:27tomorrow I might not I probably will have another one for five ten fifteen years but

00:20:34because they don’t know because it’s so different in every person as to when they have a flare-up

00:20:40or not things like travel insurance travel insurance companies are saying oh no Crohn’s

00:20:46disease oh we’re not going to take you on because you might have a flare-up and you

00:20:52might need to be hospitalised so the border’s like five minutes away in Spain where we usually

00:21:00go we can go supermarket shopping I can’t I can’t cross the border so I’m trapped here

00:21:07on the rock of Gibraltar at the moment until a travel insurance will actually give me insurance

00:21:14to get out of the border I can’t go back to the UK because I can’t fly if the plane is

00:21:21diverted to Spain because I’ve no travel insurance to look after me in Spain.

00:21:27So what message would you have to people in general what do you wish people knew about

00:21:34Crohn’s what would you have them know?

00:21:38For them to know that it’s not contagious they’re not going to pick anything up from

00:21:44you it’s nothing for anybody again as I say to be ashamed of people can come and talk

00:21:51to me anytime they want they can ask me any questions they want they can make jokes go

00:21:56bypass it by thinking you know if we don’t talk about it she hasn’t got it kind of thing

00:22:03because it’s me this is who I am now so you have to just accept the person as they are

00:22:12and and but don’t treat them any different they’re still the same person deep down just

00:22:18that they might have to go to the toilet a lot more than they ever used to.

00:22:21And it is pardon the poor little crappy disease.

00:22:24Yes definitely a crappy disease.

00:22:28A crappy disease.

00:22:32Do you have any final words of wisdom for the people of New Zealand from Gibraltar?

00:22:38Oh words of wisdom as in Crohn’s or just as in life?

00:22:42Anything in life give us some of Ali Shaw’s top tips.

00:22:48Yeah well you know my top tip you can cook everything at 180 degrees you’re never too

00:22:53young to moisturise live life to the full have a laugh and if you poo yourself on the

00:23:00street text them wet wipes with you in a change of clothes doesn’t matter.

00:23:07Thank you so much for talking to us Alison it’s been absolutely fantastic.

00:23:11You’re welcome.

00:23:12If you’d like to see any of the previous episodes or catch up with anything that we’ve been

00:23:18doing you can do that at coastaccesradiow.org.nz or at kittyskitchen.com and you’ll find lots

00:23:25of information on there.

00:23:27Huge thanks to Coast Access Radio 104.7 FM and Irii Lange Kamatu and New Zealand on air

00:23:36and finally hopefully there’s enough room.

00:23:40Alison has asked do you want to introduce the song that you want Alison?

00:23:43Yes Karma Chameleon by Culture Club because the 80s was the best decade for music.