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Hello and welcome back to my next podcast. Today I'm going to talk a little bit more

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about the book clip I got when I did my first round of Okraverse. I was going to do a second

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podcast this week, or the week just gone, but I've been a little bit busy. There's

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been a couple of quite big life changes for me to talk about, one of which I'm going

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to say is absolutely massive. So yeah, I'm going to talk about that. Before I do anything

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else, let me just sort of get back on with the book that I received, because I'll be

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honest with you, I think it's worth talking about. There's a saying, it says here, it

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talks about the treatment itself, and it sort of goes through support and everything, which

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I'll be honest with you, I think it's well worth having a conversation about, because

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if anyone out there is maybe waiting for Okraverse treatment, it might be worth just having a

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bit of a listen and getting some ideas. Because I know when with me, in the build up to it,

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I have to admit I was actually quite nervous, that's an understatement, I was incredibly

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nervous I'll be honest. But at the same time, I had other people explaining how Okraverse

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works, how it works for them and whatever else. And I'll be honest with you, it helped

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quite a lot. It did sort of calm the nerves ever so slightly. And you know, I'm a couple

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of months on since that treatment. And up to this point, perfectly fine, perfectly fine

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in terms of what the treatment itself does. It's not caused me any major issues at this

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point. But again, we don't know going forward. But I'm actually very confident, I am very

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confident and again, I've not really had any new issues since since the treatment. It's

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all old stuff. I've said this a few times, it's all old stuff. Yeah, it's old stuff at

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times that is actually getting worse. Kind of expect that with a progressive condition.

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It was always going to happen. But again, it's one of those. So again, I mean, it's

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sort of explaining things here about if you're on other disease modifying treatments, DMTs,

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you would need to stop that, obviously, to start another one. You certainly would not

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want to be combining two. But again, it's telling you things about having blood tests

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and whatever else. Again, with me, they gave me quite a few blood tests, I was checking

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for all sorts of things, even down to do I have the antibodies to deal with chickenpox.

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Thankfully, I do. But again, I mean, that's the sort of thing that surprised me. It's

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like chickenpox. I had that when I was a kid. But I can understand why. Because again, when

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they're putting this stuff in your system, it's attacking those cells that really would

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attack those kind of conditions. So in all fairness, they're going to need to know what's

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there, what's not there and everything else. So that's understandable blood tests. Yeah,

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I fully understand that. Pregnancy test. Clearly, I didn't have a pregnancy test. I mean, it

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don't get me wrong, I'm putting on a little bit of weight these days, but I didn't need

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a pregnancy test. And again, the things like not taking blood pressure medications 12 hours

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before actually sitting to take ocrevus and talking to your medical team. Should that

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be an issue? With anything like that, always talk to your medical teams. No matter what.

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Talk to your medical teams. They're the ones that can give you all of the advice that you're

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going to need. Talking about having live vaccines when you're taking ocrevus. Again, talk to

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your medical teams about that. They will explain to you what you can, what you can't and everything

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else. Because again, everyone is going to react differently. So your medical team should hopefully

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know what's best for you. So again, yes, not to breastfeed while you're on ocrevus. A bit

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of a more serious one. Don't start ocrevus if you currently have cancer. Again, ocrevus

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is attacking your immune system. Your immune system is going to be needed to do whatever

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it can to try and fight that kind of condition. So that is quite a serious one. Not one we

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can joke about and play around with. That's very, very serious. Talking to your doctor

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if you've ever had hepatitis B or are a carrier for hep B, hopefully the blood tests they

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give you should show that up if it's in your system. So again, talk to your medical team.

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I'm going to say that a lot. Talk to your medical team because your medical team will

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be able to point you in the right direction. I'm literally just giving you what I've got

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in front of me in this book. And I have to admit this little booklet was quite helpful.

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And I have sort of had a bit of a flick through it since the last podcast when I was going

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through it really for the first time. So yeah, I mean, I have had a bit of a look through.

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Talking about the day before your infusion, if you've got any kind of sign of infection,

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if you've got fevers, chills, anything like that, get in touch with your teams because

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they might have to put your, your infusion back because again, ocrevas is there and it's

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going to lower your immune system. If you've already got a cold, cough, anything like that,

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anything at all, you might just have to put it back. It would be worth it in the long

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run. Just even if it's just for a couple of weeks, talk to your team, get it put back

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because you don't want to put something that's going to attack your immune system into your

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system while you're already not well. I know that sounds really, really silly and it's

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something that pretty much everyone's going to know, but I've got to put that one out

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there purely and simply because yeah, that actually makes so much sense. It's unreal.

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It really, really does. Another thing they've got here, I'm not even going to bother reading

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this bit. With ocrevas, you have your first two half bags, you have them 15 days apart

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and then what they do six months after that, they'll get you in for your next full bag.

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So you have your two halves close together and that's just really to get your body used

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to what's going on because again, ocrelizumab, ocrevas, it's quite a serious, serious medication.

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So it's, it's well worth them. So just checking that your body's going to cope with it before

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anything else. So don't be surprised by that every six months after that. I think we can

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cope with that if it's going to mean that actually we should be in a better position

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to try and not to have too many worsening symptoms. You're always going to have some.

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Let's be fair, this isn't a cure. Ocrevas is not a cure. It's not going to make everything

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go away. Hopefully it's just going to slow the roll a little bit and make things a bit

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more comfortable. Probably the best word I can think of right now. Make things a little

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bit comfortable in the intervening time. For your infusion day, make sure you've got something

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to pass the time. Yes, absolutely yes. Whether it be a book, laptop, your mobile phone, whatever,

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snacks, drink, take something with you. Please take something with you because honestly it

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does take a while. It's not done in ten minutes. Take something with you, pass the time because

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quite honestly you're going to need to. So yes please, please do that. It might sound

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really really daft but yes it is quite a big one. Again as it's saying here, it's talking

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about pre-medication. So they're going to put a steroid into your system. That is something

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that quite honestly is very much necessary. Sticking that steroid through you. Again just

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to try and help your body a little bit. Also antihistamine. Antihistamine again is just

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going to try and help your body. Any kind of reactions that you might have, antihistamine

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is there to try and fight it off a little bit and make it less of an issue. So again

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on the day they will go through your system before ocrevus does. And I know it might sound

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a little bit, wow this is quite scary and it is. I'll be honest it is quite scary but

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at the same time actually if it's going to help slow things down it is in my personal

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opinion it's worth trying. It really is worth trying because you just, you don't know.

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If you don't have the treatment again some people don't and that's perfectly fine as

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a personal choice. But for me I had to give it a go and I will continue to give it a go

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to try and give me a way of fighting back a little bit more medically. It's all well

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and good me fighting back in a personal sense and I'm always going to do that but just that

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little something in my system to try and help that is perfectly fine and for me yes. Talking

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about infusion related after effects which is something that to be honest with you and

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as it says here 24 hours after infusion is something you've got to look out for and any

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kind of reaction itching, throat irritation, shortness of breath, flushing. Flushing is

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something after the second one I actually had a little bit of. Around the old face I

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was a little bit red but nothing major, nothing major, low blood pressure. I've actually got

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a blood pressure cuff at home so I can check my blood pressure but if you think you've

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got an issue with that please go and get seen. It doesn't matter whether you go to a chemist,

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whether you go to your doctors, whether you go to A&E, any kind of medical specialist

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get your blood pressure checked if you're concerned. It's worth doing, better safe than

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sorry. Fever, feeling tired. I actually again it's something I did suffer with especially

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after the second one I was falling asleep on the sofa quite a bit. Headaches, feeling

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dizzy, feeling sick and a fast heartbeat. Any of that sort of stuff make a phone call.

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Get yourself checked. Better safe than sorry. I'm saying that a lot today aren't I? But

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it is absolutely something that's erm, again this is all new, it's all new to you, it's

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all new to me. If you're not sure speak to those that know. That's exactly where I'm

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going with it, it's exactly what I'm going to do because you just don't know. What I

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am going to say at this point, I'm probably going to sort of give the book a bit of a

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rest because there's still quite a bit more of it I'm going to be honest with you. It's

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talking about things like more support. Again, whatever country you're in, a little Google

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search and you're very likely to find someone somewhere, some kind of charity somewhere

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that's hopefully going to be able to give you help and advice. It's well worth it for

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me and I'm going to be honest, I use the MS Society. They're incredible, absolutely

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superb, they really are. I can't thank them enough for all the help they've given me over

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the last year. And to be fair they don't even really know just how much help they've given

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me but it's huge, absolutely huge. And their website is www.mssociety.org.uk. As I say

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that's just the one that I personally use, you've got the MS Trust, www.mstrust.org.uk

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and shift.ms which is www.shift.ms. Again, sort of things, sort of people that can offer

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help. It's always worth getting the help if you can, let's be totally honest, it really

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really is. Now I'm going to kind of knock that on the head for a little bit now. I've

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had quite a big week, I've had quite a big week. Life changing, the MS diagnosis life

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changing enough because of the MS diagnosis and because of how things have gone with my

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mobility and let me make this clear right now, my mobility is not great. I struggle

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with foot drop on my right hand side quite a lot, more than quite a lot, it's constant.

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I do struggle walking around much of a distance or whatever else but I'm capable of doing

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it should I need to. Now on that note, over the last couple of months there's been meetings

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with my work and I'm not going to go massively into detail here with the kind of meetings

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but they're quite important and it's very much come to light that we've made an agreement

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for me to leave the company. Now I've been with them for the 4th of May would be 8 years

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with my current company. The agreement has been made after me talking to legal professionals

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as well as work. It's time for me to step away. Now my line of business I've been in

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the security industry for 20 years. It's a long time, a very very long time and I believe

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personally I could continue for quite some time. I do think there would come a time eventually

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where I would have to say okay, you know, here we go. But I'm capable of doing what

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I was doing to an extent. I've been a manager of the site that I'm on with another manager

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working the opposite shifts. Again I've got to say I think I've continued for a while

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yet. But the time has come, I'm officially waiting for the paperwork but a couple of

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days ago was the last time I would put on my work uniform. It wasn't easy, I'll be

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honest with you, it wasn't easy but at the same time you've got to do things at times

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that you don't want to do. This is one of those things for me I didn't want to do. Again

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I genuinely believe I've got a lot more to offer. I can do emails, I can do scheduling,

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CCTV monitoring, literally there are so many different things that I could still do. But

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sometimes you've got to accept and when legal professionals are saying to you it's probably

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the right thing to do. There we go. So as it stands at the moment, I'm for want of a

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better term, I'm on gardening leave but it's just a formality at this point waiting for

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the paperwork to come through and then that would be me done. 20 years in security, done,

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done, boom, poof. No more getting up at quarter past four in the morning to go to work four

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days a week for 12 hours a day. That ship has sailed. Time for me to start looking for

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something else and for me to start a new chapter and part of that new chapter is going to be

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these podcasts, really trying to ramp things up a little bit. My social media accounts

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again ramping things up a little bit, really trying to push this different way of life

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because that's kind of where we are now. I'm at a point where it's a different way of life.

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One door closes, well I'll kick through the next one and that's what I'm going to do.

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On a lighter note, I had a physio appointment and I know I've mentioned it, I was being

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fitted up for a fez machine, functional electrical stimulation. Wow, absolutely wow, there's

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not a lot more I can say, it was incredible. As I said, I've been walking for a long time

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with quite a severe foot drop on the right hand side, my toes drag across the floor,

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I can't lift my foot properly to walk anything like that. They put this fez machine on me

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and don't get me wrong, it's not going to cure things like the fatigue I suffer when

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I walk or anything like that. I'm not expecting it to but what it is doing is it's raising

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my foot so I could walk properly. For the first time in a very very very long time I

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was able to walk properly. I could walk, I was still using my crutches, that's fine,

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not bothered about that. I was walking without the fear of falling over. I was walking, actually

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stood upright. I've not done that in a while, I've hunched over and walked for a very long

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time because I'm trying to adjust myself to the point I'm not going to fall over and I'm

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trying to get used to walking with the foot drop. I didn't need to do that, this machine

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was on me and I didn't need to do that, it was absolutely superb. I don't know what more

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I can say about it. The referral has been put in for me to go and get one that I can

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bring home and use in my daily life. Honestly I can't explain how it made me feel to actually

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use that machine and be able to walk properly. The day after I suffered, wow honestly I was

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in agony because I pushed myself that hard. I don't care. I'll take that because being

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able to walk properly means actually I wasn't falling over, I wasn't risking falling over,

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I was being able to walk more comfortably, stood upright. Just wow. Just wow. The two

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physios I had with me, absolutely incredible. Absolutely different class. It was to the

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point and I'm going to be totally straight with you. I got emotional. Walking properly

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like that for the first time in such a long time, I got really emotional and yeah there

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was more than one tear shed because genuinely I didn't think that would ever happen again.

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I never ever thought I would walk like that again. So yeah honestly I can't explain to

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you just how it made me feel. It was a whole different level of superb. There is not really

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a lot more I can say about it apart from wow, wow, wow, wow. It's going to take a few months

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I think to get me on. That's fine. The sooner the better. But that's fine. I'll accept that.

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However long it takes it takes because actually it's worth the wait. Very much worth the wait.

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So yeah I mean that's how my week's been. As I say it's been a bit of a life changer.

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The fact that I don't get up for work in the morning anymore, it's going to take some getting

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used to and yes I am looking for work. It's not me done in the workplace but it's me done

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in that type of workplace. 20 years in the same industry. Yes it's long. It's very very

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long. But there's other things out there that I can do and I'm going to do. Let's just see

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where the time takes us on that one. I'll keep you up to date don't panic. I'll keep

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you up to date. So yeah massively life changing week. I'm going to be honest. Losing, effectively

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losing my job. I haven't been dismissed or anything like that. It's a mutual agreement.

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One that I probably wouldn't have agreed to if I didn't need to. But I've agreed to it.

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And this fez machine. Again that could change my life. I'm going to be honest that could

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change the way I get about. It could hopefully make things a little bit easier when it comes

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to walking. Wow. Absolutely wow. I can't say anything more than that. That machine is just

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different class. But yeah I think that's probably where we're going to leave it for today. As

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I say I wanted to get the conversation out there about the book I received from the Okra

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River Street one. Because again from my point of view I was really nervous. So if I can

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try and help some others out there I want to. I want to. And I wanted to get the conversation

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out there. The cat's out of the bag now with regards to work. And yeah that's where we

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are in terms of my fez machine. In time. That's coming. And I can't wait. I genuinely can't

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wait. Well thank you very much for listening. I know we're looking at another 25 minute

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podcast this one. But do you know what it was worth it. Very worth it and I hope it's

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worth it for you to listen to. Have a great few days. I am going to be talking to you

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again soon. Because I've got nothing but time on my hands. Speak soon. Bye bye.