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Hello, welcome to episode 17. I would just like to start today by welcoming a lot of

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new listeners. I'll go into a bit more detail on that later in the show, but each and every

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one of you, nice to speak to you again this week my friends, very much pleased to be here

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talking to you. On the show today, a few bits and pieces for me to go over. I've had some

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good news, for me personally it's good news from my MS team, the MS coordinator called

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me in the week, so I'll explain that in a bit more detail. I've also been invited onto

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a medical study, yeah me, a medical study, okay, I'll explain. I've also, during the

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course of the week, I've had the occupational health get in touch with me, that's through

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work, so yeah, something to look forward to. Also, I'm going to explain the issues that

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I had, predominantly Friday night, but they're still sort of going on a little bit now, but

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again, we'll get to that and I'll explain exactly what the story is. We'll start today

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with me saying, the phone call I had from the MS coordinator the other day, put a massive

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smile on my face. As I've mentioned previously, on previous shows, I've been waiting for a

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lumbar puncture, which the MS MDT team wanted to do, just to confirm exactly what the story

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is and at what level my MS is at. Let's say the MS has been diagnosed now for a good few

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months, but the one thing they hadn't done was the lumbar puncture. It had been diagnosed

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off the back of MRI scans and my physical presentations of how things are going. So,

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as I say, the MS MDT team wanted to have the lumbar puncture done before I went onto any

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kind of treatment, just to confirm it. The date for that is the 20th of December. To

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say I'm a bit nervous is a huge understatement because I am absolutely pooping myself over

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it, but actually in the grand scheme, I am really excited and I know that probably sounds

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quite daft, but actually I'm excited for one reason and one reason only. Let them cross

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their T's and dot their I's. Let's get me on some treatment. I know the treatment they're

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looking at is never going to cure what I've got. I mean, that's cold hard fact. I've come

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to terms with that. I've got no issue with that, but hopefully it can slow the decline

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a bit because the decline is actually coming quite thick and fast recently. I've mentioned

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that on previous shows, but I really would like to arrest the slide a little bit, try

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and get a bit of time. Even if I'm just staying as I am, it's not nice, it's not comfortable,

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but I'd rather that than keep sliding down this slippery slope that I seem to be going

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on. So yeah, hopefully we'll get that lumbar puncture done on the 20th. They see what they

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want to see and fingers crossed I can really start pushing towards some form of treatment.

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I know I still got to have a chest X-ray and blood taken before I can go on any kind of

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treatment. That's fine. One job at a time is get the lumbar puncture done and then let's

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get them done nice and quick so I can try and push towards this treatment because genuinely

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it's becoming very difficult. But here's what it is, I don't intend to dwell on the negative.

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I am a very positive person and yeah okay I have days where I'm really struggling, but

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you know what, in the grand scheme of things, the gloves are on and I'm fighting. Simple

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as that, I'm fighting because I've said it previously and I'm going to say it again,

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I've got MS, MS does not have me. I've got a life to lead, I've got a family to be with

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and that's what I'm going to do. Going on to point two for today's show, I had a phone

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call from my MS coordinator, it was actually during the phone call for the lumbar puncture

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and I've been asked if I wouldn't mind joining a medical study through a university into

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how MS affects the memory because I must admit I'm having some quite bad issues memory wise

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at the moment. I mean quite honestly at times I can have a conversation two minutes later

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I haven't got a clue what's been discussed. It's not all the time, it's only happening

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now and then but it's not nice and I'll be honest with you it's getting me down. Again,

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I want to be completely honest with you all, it's getting me down. The memory aspect of

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it is really starting to frustrate me but it is what it is, I've just got to get used

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to it. But yeah I've been invited on to this medical study and in front of me I've got

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the email that they've sent me and it states on there, I'm not going to explain what the

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university is because to be honest with you I don't know what I'm supposed to talk about

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and what I'm not. Again I'm still really new to all this stuff so please please bear with

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me. But it says here, many people with MS, 70% have problems with thinking skills such

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as problem solving, attention and memory. Yep I'm definitely one of those people. These

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problems cause distress and disability, distress absolutely. There is need for treatments to

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address them, I totally agree with that. There's been a new brain training treatment developed

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to try and help people with MS and basically the aim of this study is to try and assess

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whether actually it's going to benefit people like us with MS to go through this treatment

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and see if it's going to actually help us with our memories. As I say from my point

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of view, whatever I can do to help others, I'm actually quite prepared to do. I've always

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been the kind of person that's sort of, do you know what I'm not getting involved, blah

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blah blah. You know what, my thought process has changed drastically on all that sort of

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thing. Actually I'm here to help. I'm doing this podcast purely and simply, two reasons,

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two reasons. One, it helps me to get this stuff off my head, out of my brain and out

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into the world because again talking about things actually is the way forward, it's the

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only way to try and help yourself, I'm not going to use the word heal because we're never

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going to heal, but to try and help yourself come to terms with things and just not have

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so much negativity in your own head because again there can be a lot of that, let's be

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honest. So yeah, I mean I've taken on this study, I've got a phone call coming up with

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them in the week, it's a video call where we just sort of go over everything and they

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confirm 100% that I'm right for the study and fingers crossed I am because again I'm

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here to help, whatever it takes. So again I'm really quite looking forward to that because

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if that happens, yeah I'm keen, I'm on board, let's do it. Give me a second, I'm just going

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to have a little sip of my cup of tea because it is a bit chilly out here in what I'm now

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dubbing my studio. As I've explained previously, all it actually is is our brick shed, but

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it works, it works, I'm using it as my studio. In terms of the phone call I've had for occupational

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health from work, they've been in touch and in the week we are going to have a proper

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phone call, I've got one of their medical assessors calling me up and they want to have

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a conversation with me to try and figure out if there's anything they can do to help me

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while I'm at work predominantly, just to see if there's any adaptions or anything else

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that can be done. I have to be honest, I don't think there's going to be anything, I really

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really don't. I go to work and again I'm not going to explain exactly what I do for

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a job, but I can spend time sat down, there's always emails and things to do and again I

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can just sit and help the best I can while I'm keeping myself safe and secure. So we'll

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see, I mean it may well be, it is occupational health, they know what they're talking about,

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they know what they're doing, so it might well be that actually they can think of things

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that I can't, it wouldn't be difficult. So yeah I'm looking forward to that, phone

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calls are going to be very very soon and we'll go from there. I've got to explain what happened

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Friday night because that wasn't very nice. Got in bed. Now again coming back to the memory

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aspect of things, I could not remember for the life of me if I had taken my pain medication

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and trouble is I'm the type of person if I'm in doubt I'm not going to take it. It really

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is that simple, I'm not going to take any risks with it. I've never been one, apart

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from Ibuprofen or Paracetamol I've never had to take any painkillers or anything like that

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previous. So I am a bit nervous, I'll be totally honest here, but I'd forgotten to take them,

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didn't want to take the risk and during the course of the evening because I went to bed

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really really early, I was up for work at quarter past four the following morning,

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so again early night try and get some sleep. I started getting some really horrible pains,

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they were like electric shock type pains in my legs, my arms and the back. I had these sort of

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tickly type feelings on my head which was very very strange. It genuinely at times felt like

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somebody was just I don't know rubbing cobwebs or something across my head, in my calf muscles,

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both legs my calf muscles. These electric shock feelings was just horrible, I couldn't get

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comfortable with nothing, it was absolutely yeah I can't really explain it to be honest

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with you apart from the fact it hurt a lot and I've got to be honest it made me quite scared

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I was afraid of what was going on. So taking advice from Lisa, I rang 111 to try and get some

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medical advice because again not afraid to use the word I was scared, it was really worrying me

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because I've had those feelings previously but actually not for quite a few years and at that

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point obviously I didn't have a clue what was going on I just sort of tried to fight through it

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so yeah I rang 111 to try and take some medical advice. Unfortunately 111 was incredibly busy

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on Friday night so after being on hold for quite a while and my thought process of

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it's not long till I've got to be up for work I mean by the time I'd phoned 111 it was about

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10pm and I'm thinking I've got to be up at quarter past four I can't let work down so I did nothing

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more than hung up because I couldn't keep staying on the phone in the hope of talking to someone when

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it's the sort of thing chances are I'm gonna have to start getting used to so I did no more

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I kept myself laying down and I really thought to try and get some sleep because

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sleep's one thing on and off I struggle with and having work I've got to try and get some sleep

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so I did and thankfully with Lisa's help I did manage to get some sleep that night which was

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nice and I will say the electric shock type feelings are still there certainly in my legs

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calf muscles and thighs predominantly but they're not as bad as the other ones and I'm not sure

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if I'm going to be able to get any sleep in my legs because obviously I'm back on my

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tablets now so I'm hoping that might start easing off soon

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sorry just having another swig of my tea but yeah I mean it was it was not nice not nice

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coming away from the not nice I have to say it um it was two days this week Wednesday and Thursday

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I had massive spikes in my downloads of this podcast and I can't be honest with you I was

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buzzing absolutely bouncing off the walls I was so excited so happy the level of pride

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that it was giving me to know that actually people are downloading and listening to the sort of

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things I'm saying because what I want this show to do I want people to see that yeah this is

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absolutely horrific this condition is evil but not just MS I mean at the end of the day anything

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that you've got that's not good I want people to see that talking about it just just talk about

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talking about it just just talk about it don't be afraid to get what you're thinking out in the world

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because actually when it's out there hopefully it takes just that tiny little load off your own mind

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and yeah I gotta say it I literally in two days I got two weeks worth of downloads

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that's massive and don't get me wrong in the grand scheme my numbers are tiny they they really are

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they're very very small but you know what the level of pride to seeing that was unbelievable

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so I've got to say it to every single person out there that's downloading and listening to this

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podcast I've said this a million times but I really do mean it thank you each and every one of you

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thank you to my new friends that are downloading welcome it's an absolute pleasure to be talking

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to you and I really hope I'm going to be talking to you for a long time going forward and just

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remember that you know what I'm here I'm quite a happy person yeah I'm going through an absolutely

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rubbish time like we all are but I'm happy I'll try and keep you entertained and yeah by all means

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come over and join me on my social medias I'm on Instagram and I am on TikTok it's the same handle

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as I've got for the show it's Mike's underscore ms underscore journey come over come and say hello

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drop me a message because I do try the best I can to try and message people back and have conversations

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there's one more thing I've really got to talk about I've been

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mega excited since it happened coming home from work on Friday sat on Eleanor my mobility scooter

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and coming across a road I bumped into Santa Claus and Mrs Claus absolutely brilliant it was

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chap and his wife dressed up as Santa and Mrs Claus pulling this tiny little sleigh

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full of presents for kids and they were literally just walking the streets of my town

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and seeing kids giving them just little presents it was brilliant absolutely fantastic I have to

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say it I did take a selfie with them and that's on my Instagram but yeah no honestly it was

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fantastic and I did I had a bit of a chat with them for a little while and I said to them

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and I said to them actually just how grateful I am and they asked if obviously I've got kids

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and I explained yes and they actually gave me a teddy to bring home for the kids

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that was lovely and the teddy was gorgeous honestly it genuinely was absolutely fantastic

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so yeah I have to say made my day really did made made my day so yeah I just had to put that one

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out there so we can finish on a finish on a high thank you all once again I'll never stop saying

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those words because genuinely I am incredibly grateful to each and every one of you for

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downloading and listening I very much looking forward to talking to you in a week's time

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have the best possible week you can speak soon bye bye