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Hello, how is everyone? I hope you're all doing okay, I hope you've all had a good week.

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Well, mine hasn't been too bad. It's not been too bad at all if I'm totally honest.

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I'm going to do a bit of a quicker show this week because the main thing that I really

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want to talk about is in the last week, I've had my letter that I've been waiting for for

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a while for an MRI scan. Now, it's been over a year since my last scan and as we know,

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with MS, you're actually supposed to have a scan once a year. Just to sort of keep an

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eye on the disease, see what's going on, see if any new lesions are opening and whatever

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else. Now, whereas it's been over a year, what I've noticed and I've said it a few

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times, I think, when I've done shows recently is I've noticed certain symptoms are getting

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worse. I've noticed that new symptoms have started from time to time. There's been issues

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arise that are quite obviously not from old lesions or old injuries. It just seems to

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be that there's new things going on. The biggest of which, I said it was Christmas

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Day, the night of Christmas Day, I started with a burning feeling coming and going in

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my left foot, left ankle. That started working its way up my leg a little bit now. It's sort

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of in and around the calf muscle when it happens as well now. But I made mention when we were

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doing our TikTok Live, the MS Roundtable TikTok Live on Wednesday at eight o'clock,

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I made mention that actually I've not heard anything for quite some time from the MS team

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in terms of having an MRI. Well, I've got my date for my next treatment and I'm thinking,

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okay, so they're doing a treatment without actually checking. Turns out they're not.

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The date is here on Friday of this coming week. I've got my next MRI scan. Now, usually

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I'd get a letter for an MRI scan and I'd be thinking to myself, I'm a little bit, a little

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bit, there's trepidation about it. You know, there's a little bit of fear about the scan.

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Now I know previously I've done a show towards the very, very start of this podcast where

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I talked about ways that I'd learned to get over my fear of scanners. I'm going to go

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back into that again today because there's people that may well have joined that have

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not listened back to old shows and that's perfectly fine to understand. So I'm just

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going to kind of explain a little bit about how I overcome the fear, what fear was and

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everything else. But first, just the thought of the scan itself. There is no fear. I've

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got no, no concerns, no nothing for once. I've got a scan coming up and I'm really not bothered.

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Honestly, I'm not bothered. In fact, kind of excited in a way because as I was saying,

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I can feel like there's new stuff happening, but I am interested to know what the actual

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story is. Is it old issues that are getting worse and becoming more pronounced or is there

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new things going on? We'll find out soon. We will find out soon enough. And that's the

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whole point. For once, I'm actually looking forward to, I'm actually quite excited for

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the fact that I'm just going to get in the tube. I'm just going to get in the tube and

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get done. And in fact, I'm actually in a different scanner. The hospital that I have my scans,

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you've got the scanner in the actual MRI department, which is the one I normally go in, which is

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kind of cool. I'll be fair. I've got used to it. I can give them a CD. They've got a

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nice big set of headphones that they give me. I can sit in there rocking out to a bit

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of 80s music and 80s rock, mainly. I did once actually go for a little bit different and

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it was okay. It was all right. But again, this time I'm looking for a bit of 80s rock

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to take with me, but I don't know for certain because this is a mobile scanner. So I don't

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actually know whether I'm going to be able to listen to music this time. So it could

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potentially be a bit of a change, a bit of a change of scenery and a bit of a change

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of thought process for me because like I say, I'm used to sort of getting in there and knowing

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I'm going to be rocking out and trying not to sing along. I'll be fair, trying not to

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sing along because let's be honest, you're listening to that kind of music, it's very

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difficult not to try and... Yeah, just sing. Just sing. It's really difficult to not do.

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But it is, you know, it's going to be new. But again, I'm actually, I've got no fear.

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I've got no fear of it at all. I'm going to explain. It always used to be the minute I

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walked into the scanning room and saw the scanner, I would start to shake. I would genuinely,

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I'd start to shake and there's nothing that could stop me. Even to the point when I was

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brave enough to actually get into the scanner, they couldn't scan me because I'm shaking

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so much that no matter what they tried, it was not possible for them to actually get

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a decent picture. So they'd have to whip me out. I couldn't stay in the scanner. Obviously,

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the way things went, you know, I went for a couple of open scans, which showed up the

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demyelination. That wasn't brain scans. Open scanners can't do brain scans. It's only

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the code scanners. So I sat there, had those done. The second one, I had to have the contrast

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die put in just to double check what was going on to see if there was any kind of other reason

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for the dark patches that were being seen. It wasn't. So it came time that I really had

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to change things around a little bit for myself because I would never have got a diagnosis

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if it wasn't for the fact that I overcame the fear of the closed scanner because they

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needed to do a brain scan. Let's be fair, I'm actually quite impressed they found a

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brain in the first place. I've said that before. I'll say it again. My personal thought on

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it is it means there's actually something rattling around in there. It isn't just like

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a mouse in a wheel going round and round and round. You know, is what it is. But I looked

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on some support groups and there was suggestions made. I kind of doctored those suggestions

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a little bit to myself and it worked. It worked. The first one was actually one that I came

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up with on my own. And what that was is the minute I walked into the scanning room itself,

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walk straight up to the scanner and put my head inside the scanner. Because to my mind,

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one of the biggest things was the shock value of being put in there on that bed and the

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scanner. The whole scanner is enclosed apart from feet end and head end. Now, it was quite

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a big thing actually that I did that. It really was. Because I put my head in, I'm looking

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round, I'm looking at the size of the scanner itself inside it. I'm looking how smooth it

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is. It's one of the things I'm looking to see how smooth it is and it is incredibly

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smooth. So there's nothing in there that I can bang my head on. There's nothing in there

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that can cut me. There's nothing in there that I can hurt myself on. That's a good start

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because it took away the fear of what if this happens? What if that happens? Well, that's

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not possible. The cutting, the banging yourself on things. It just can't happen. It's not

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possible. So again, really did help. Now, again, as I've just mentioned, handing over

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a CD to the scanning team and saying to them, can you put that CD on for me? And they provided

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me with big headset for me to put on and listen to music. It kept me calm. It kept me relaxed

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because again, I'm not bothered about the noise of the scanner, but I'll be totally

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straight. I couldn't care less because I know the noise can't do anything. But having something

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else to concentrate on, having something I enjoy to listen to playing in the background,

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not even in the background, you know, similar to the headset I've got now, to be fair, big

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headphones blasting away some decent quality music. It kept that level of concentration

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elsewhere away from what was actually going on. Again, that helped. Another thing that

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helped and it was quite quite a strange occurrence. I'm going to be honest with you. But again,

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it sort of it to an extent made me understand that actually the scanner isn't as big and

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long as you think it is because the first time one of the scanning team walked around

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the back of the scanner itself and just very gently reached in and just touched the top

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of my head. Now that made me realise if a person's arm and the member of staff that

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did it wasn't the tallest, they weren't the biggest person ever. So they didn't have massively

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long arms. They was able to reach in and you could feel they weren't at full stretch and

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just touched the top of my head. And I'm thinking that means it isn't that far to the exit.

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Again, it just gave me that level of calmness that made me think, well, do you know what?

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Actually, I get this. I understand what the story is here. So again, it just took away

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that other layer of, oh my word, this tube is huge. It's massively long. I'm nowhere

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near an exit. I am near an exit because I can see the bun by my feet. It's not that

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far. And hang on, now I know there's one behind my head as well. So I can get out two different

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directions. Not a problem. Not a problem at all. So yeah, again, that was so, so helpful.

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It was kind of, it was an accidental thing that kind of did it. It really was. It was

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an accidental thing, but it worked. It really did work. And lastly, lastly, something that,

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again, I'll be honest with you, was kind of to trick my brain a little bit. And all it

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was was when I was told how long each scan was going to be, under count. So if I was

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told a scan is going to be four minutes, for instance, I would count slowly in terms of

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seconds. So I'm counting each scan. One, two, three, four, and so on to confuse my brain.

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When they say at the end of the scan, okay, that scan is complete. We're now onto the

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next one. Well, that scan is only taken three of the four minutes, maybe three and a half

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minutes. Doesn't matter. It still took less time. So in my head, I'm going, hang on, I'm

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not going to be in here for as long as I think I'm going to be in here. So again, it was

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something that worked for me to confuse myself to the point of saying, yeah, do you know

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what? This isn't as scary as it seems. It's not that frightening. All of that combined

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got me to a point where, you know, the longest scan I've had was over an hour. And to be

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fair, it didn't cause me any problem at all. You know, even when I have the brain scan,

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I have a cage put over my head, which again, sounds really terrifying. It's not because

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the cage can't hurt, but I have the cage put over my head. And the way I look at that is

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that's just another level of safety. That's another thing that's going to protect me should

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anything happen. So again, that didn't bother me. It really didn't bother me at all. Because

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again, I'm telling myself and I'm explaining to myself how that is going to protect me

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and keep me safe should anything go wrong. Now let's be totally honest. If anything goes

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wrong in that scanner, I am not stuck. You are not stuck in that scanner. Even if the

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bed doesn't move, you're not strapped down. You can crawl out of that scanner. You are

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not stuck under any stretch of the imagination. You are just not stuck in there. And again,

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it's something that it helped me quite a lot. It really did. It's something that changed

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my thought process on MRIs. It took away the fear. It took away all the concern, everything.

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And again, I'm at a point where the letter has turned up. It's hit my doorstep and I

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don't care. I'm actually quite looking forward to it because I want to know what the story

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is. Have any of my lesions got any worse? Have any of my lesions kind of just stopped

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getting worse? Has any new ones opened? I'm not going to know until I actually lay there

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in that scanner and figure this stuff out. Because again, once that's done, it's only

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blood tests. And then I've got my next lot of treatment. Now again, for myself, I'm on

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ocrelizumab, ocrevis. And yeah, okay, it can be. And I know I mentioned this in a previous

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podcast. I'm not going to go too far into it. And it can be a very harsh treatment.

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But the MRI scan, the blood tests, all of that sort of stuff, what that's there for

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is to ensure the treatment is correct. It's done properly and there's nothing anywhere

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that could potentially cause more of a problem. Now again, I'm going to be straight. I used

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to have an absolute phobia of needles. A genuine, genuine phobia of needles. Now being diagnosed

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with MS, you kind of get used to needles. You can't not. It is what it is. You know,

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you're going to have to have injections, blood tests and whatever else. Just a fact. Now

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there's one real way that actually I got myself, and I'm not even going to say out of the

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phobia because I don't think I've necessarily cured that. But I've got myself to the point

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where I'm not bothered about a needle. And I did that by way of just not looking. When

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they bring a needle over to me, I know what they're going to do. I know where it's going

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to go. I don't look at it. Simple as that. I just do not look at it because if I look

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at it, it's real. If I don't look at it, I'm not bothered. And when I'm having treatment,

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when I'm actually plugged in and the infusions going on for ocreavus, now I've got the needle

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either in my hand or in my arm. I'll try not to knock my microphone everywhere. I've either

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got it in my hand or in my arm. I prefer it in my hand, I'll be totally honest, because

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it means I'm able to get on the laptop and do bits and pieces. But I'm not that fussed.

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I try not to look at it. I'll be honest, I try not to look at the needle when it's in

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there. I know it's difficult because when I'm on my treatment, it's around six hours,

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give or take. But again, I try and block it out by doing other bits and pieces. And I'm

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quite lucky today, I've had good people to talk to, the nurses that deal with my treatment

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and whatever else have been brilliant, even to the point making cups of tea. You know,

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everything, even the tiniest little thing can help. And it does. It really, really does.

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So it is very much at the point now where all the fears, all the phobias that I've got,

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because previous to all of this MS stuff, I've never really been the kind of person

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that gets involved with anything medical unless I was a first aid or I was helping somebody

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else. So to get to a point where I'm getting used to that sort of stuff and figuring out

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ways of no longer being frightened of it and the rest of that, taking all of that sort

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of stuff away, it's taken time. But actually, I'm at a point now where I'm confident going

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into that stuff. I certainly wouldn't say I'm happy about it, but I'm confident. I'm

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quite a relaxed state of it, which actually is very helpful. It really is. It's very,

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very helpful because being relaxed about it, again, it takes away a certain avenue of fear,

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takes away a certain level of concern and whatever else. And if you're able to do that

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sort of stuff while you're calm, while you're relaxed, it's going to seem a lot less of

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an issue. Now, again, I know not everyone's the same. I know my little tricks I've used

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for MRIs and whatever else are not going to work for everyone. That's just a fact. As

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a human, we're all different. But if you can just, even just one part of that, just be

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able to use it and twist it to your own needs to kind of help you get through any kind of

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fear genuinely, genuinely, it's worthwhile. And I would, I would strongly suggest giving

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that sort of thing a go because again, when you actually take a step back and you look

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at an MRI scanner, it physically can't hurt you. It can't hurt you. There's nothing there

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you can hurt yourself on. Is it nice being in an enclosed space like that? No, of course

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it's not. But is there any kind of ouchy that can come from it? Not really. It just, there

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isn't really. I mean, to an extent for me, I am now, I look back at how I was previously

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and think, why didn't I know all this stuff beforehand? Now I do think it's the kind of

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knowledge that should be passed out and given out to be able to cut down on the amount of

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missed scans because I am aware that there is lots, many, many scans go missed, which

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costs money. And that money, you know, it's staff time and whatever else and, and everything

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else. And again, you know, I'm not going to go into the politics of it all because that's

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not my place. It's genuinely not my place, but there's got to be better ways. There's

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got to be better ways. One of those ways in my opinion, and I'm just going to put this

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one out there and I have said it previously, but again, it was many shows ago now, so I

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just want to share it again. For me personally, I just wonder, would it be worth one open

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scanner being purchased per hospital trust to be used for those that are majorly claustrophobic

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and can't go into a closed scanner? Don't get me wrong for a brain scan. I totally understand

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it. You're still going to need the closed scanner, but there's also going to be a large

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number of scans there that are successful based on the fact they're open. Now having

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been in an open scanner twice, I can say you physically, there is no claustrophobia attached

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to it completely open above you in front of you the whole lot. It is comfortable. Even

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if then transport to that one scanner was provided, potentially that could save a lot

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of money on missed scans because again, they cost money. I'm not going to go into how much

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because I don't know, but it's just another technique and another thing that could be

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used to improve services and whatever else. And again, I've got to say, I'm not a politician.

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Far from it. I'm not a politician. Just my thought process and somebody better than me

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would probably be able to come up with reasons why one, it can't work or two, how it could

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work. And if that was possible, great, fantastic. But that's just my thoughts on it. Whereabouts

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are we? Give me just a second. Do you know what? I actually felt I'd probably be lucky

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to do 15 minutes on today's show because it's much later in the day. Already 25 minutes.

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I'm quite impressed. I'm quite impressed. Lastly, today, what I want to talk about is

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something that again, and again, I've mentioned it, I have mentioned it. Something that I'm

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doing to try and keep myself going and keep myself ticking over things like the gaming

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YouTube. It's improving to a point now where actually I'm, I feel like I'm getting somewhere

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with it. Do you know what I mean? I feel like I'm getting somewhere with it. And the reason

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I want to bring that up is because again, I think it is so important to have hobbies

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and things to look forward to because being able to look forward in that manner, you think

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to yourself, what am I waking up for today? What am I going to do today? And to wake up

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and have something in your head and go, right, that's what I've got to do today. That's

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got to be done. That's really important. It is incredibly important. And even if it is,

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right, do you know what? All I'm going to do today is I'm going to have a shower. I'm

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going to have a bath. I'm going to brush my teeth. I'm going to do the washing up. It

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doesn't matter what it is. As long as you've got something there that you can feel like

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you've achieved and it could be the smallest little thing, genuinely the smallest little

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thing, it doesn't matter. Something is better than nothing. It really is. And for me, the

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gaming YouTube is something I'm really pushing towards. I'm trying to learn to edit videos.

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I'm trying to learn everything I can. I'm trying to learn about search engine optimization,

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SEO, everything like that. Because again, if it's going to help me improve, then it's

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worthwhile. And again, I'm trying to do it with this show. You know, for once actually,

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I've just carried on talking rather than what I've been doing recently, stopping, going

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to get a drink, whatever else, come record the next part of the show. I've not needed

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to actually. It's been quite fun. Do you know what? I've quite enjoyed it. I've set everything

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up slightly differently. I'm hoping that I'm a bit more visible, not quite so close to

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my face. And again, it's improving. It's that little level of improvement that it's

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just worth finding. It really, really is. Well, I think we'll probably call that an

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end for today. Really appreciate you listening. I will on the next show, I'm going to explain

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to you how the scan went. And yeah, we'll talk soon. Have a good week. Bye bye.