Hello, how is everyone? I hope you're all doing okay, I hope you've all had a good week.
Well, mine hasn't been too bad. It's not been too bad at all if I'm totally honest.
I'm going to do a bit of a quicker show this week because the main thing that I really
want to talk about is in the last week, I've had my letter that I've been waiting for for
a while for an MRI scan. Now, it's been over a year since my last scan and as we know,
with MS, you're actually supposed to have a scan once a year. Just to sort of keep an
eye on the disease, see what's going on, see if any new lesions are opening and whatever
else. Now, whereas it's been over a year, what I've noticed and I've said it a few
times, I think, when I've done shows recently is I've noticed certain symptoms are getting
worse. I've noticed that new symptoms have started from time to time. There's been issues
arise that are quite obviously not from old lesions or old injuries. It just seems to
be that there's new things going on. The biggest of which, I said it was Christmas
Day, the night of Christmas Day, I started with a burning feeling coming and going in
my left foot, left ankle. That started working its way up my leg a little bit now. It's sort
of in and around the calf muscle when it happens as well now. But I made mention when we were
doing our TikTok Live, the MS Roundtable TikTok Live on Wednesday at eight o'clock,
I made mention that actually I've not heard anything for quite some time from the MS team
in terms of having an MRI. Well, I've got my date for my next treatment and I'm thinking,
okay, so they're doing a treatment without actually checking. Turns out they're not.
The date is here on Friday of this coming week. I've got my next MRI scan. Now, usually
I'd get a letter for an MRI scan and I'd be thinking to myself, I'm a little bit, a little
bit, there's trepidation about it. You know, there's a little bit of fear about the scan.
Now I know previously I've done a show towards the very, very start of this podcast where
I talked about ways that I'd learned to get over my fear of scanners. I'm going to go
back into that again today because there's people that may well have joined that have
not listened back to old shows and that's perfectly fine to understand. So I'm just
going to kind of explain a little bit about how I overcome the fear, what fear was and
everything else. But first, just the thought of the scan itself. There is no fear. I've
got no, no concerns, no nothing for once. I've got a scan coming up and I'm really not bothered.
Honestly, I'm not bothered. In fact, kind of excited in a way because as I was saying,
I can feel like there's new stuff happening, but I am interested to know what the actual
story is. Is it old issues that are getting worse and becoming more pronounced or is there
new things going on? We'll find out soon. We will find out soon enough. And that's the
whole point. For once, I'm actually looking forward to, I'm actually quite excited for
the fact that I'm just going to get in the tube. I'm just going to get in the tube and
get done. And in fact, I'm actually in a different scanner. The hospital that I have my scans,
you've got the scanner in the actual MRI department, which is the one I normally go in, which is
kind of cool. I'll be fair. I've got used to it. I can give them a CD. They've got a
nice big set of headphones that they give me. I can sit in there rocking out to a bit
of 80s music and 80s rock, mainly. I did once actually go for a little bit different and
it was okay. It was all right. But again, this time I'm looking for a bit of 80s rock
to take with me, but I don't know for certain because this is a mobile scanner. So I don't
actually know whether I'm going to be able to listen to music this time. So it could
potentially be a bit of a change, a bit of a change of scenery and a bit of a change
of thought process for me because like I say, I'm used to sort of getting in there and knowing
I'm going to be rocking out and trying not to sing along. I'll be fair, trying not to
sing along because let's be honest, you're listening to that kind of music, it's very
difficult not to try and... Yeah, just sing. Just sing. It's really difficult to not do.
But it is, you know, it's going to be new. But again, I'm actually, I've got no fear.
I've got no fear of it at all. I'm going to explain. It always used to be the minute I
walked into the scanning room and saw the scanner, I would start to shake. I would genuinely,
I'd start to shake and there's nothing that could stop me. Even to the point when I was
brave enough to actually get into the scanner, they couldn't scan me because I'm shaking
so much that no matter what they tried, it was not possible for them to actually get
a decent picture. So they'd have to whip me out. I couldn't stay in the scanner. Obviously,
the way things went, you know, I went for a couple of open scans, which showed up the
demyelination. That wasn't brain scans. Open scanners can't do brain scans. It's only
the code scanners. So I sat there, had those done. The second one, I had to have the contrast
die put in just to double check what was going on to see if there was any kind of other reason
for the dark patches that were being seen. It wasn't. So it came time that I really had
to change things around a little bit for myself because I would never have got a diagnosis
if it wasn't for the fact that I overcame the fear of the closed scanner because they
needed to do a brain scan. Let's be fair, I'm actually quite impressed they found a
brain in the first place. I've said that before. I'll say it again. My personal thought on
it is it means there's actually something rattling around in there. It isn't just like
a mouse in a wheel going round and round and round. You know, is what it is. But I looked
on some support groups and there was suggestions made. I kind of doctored those suggestions
a little bit to myself and it worked. It worked. The first one was actually one that I came
up with on my own. And what that was is the minute I walked into the scanning room itself,
walk straight up to the scanner and put my head inside the scanner. Because to my mind,
one of the biggest things was the shock value of being put in there on that bed and the
scanner. The whole scanner is enclosed apart from feet end and head end. Now, it was quite
a big thing actually that I did that. It really was. Because I put my head in, I'm looking
round, I'm looking at the size of the scanner itself inside it. I'm looking how smooth it
is. It's one of the things I'm looking to see how smooth it is and it is incredibly
smooth. So there's nothing in there that I can bang my head on. There's nothing in there
that can cut me. There's nothing in there that I can hurt myself on. That's a good start
because it took away the fear of what if this happens? What if that happens? Well, that's
not possible. The cutting, the banging yourself on things. It just can't happen. It's not
possible. So again, really did help. Now, again, as I've just mentioned, handing over
a CD to the scanning team and saying to them, can you put that CD on for me? And they provided
me with big headset for me to put on and listen to music. It kept me calm. It kept me relaxed
because again, I'm not bothered about the noise of the scanner, but I'll be totally
straight. I couldn't care less because I know the noise can't do anything. But having something
else to concentrate on, having something I enjoy to listen to playing in the background,
not even in the background, you know, similar to the headset I've got now, to be fair, big
headphones blasting away some decent quality music. It kept that level of concentration
elsewhere away from what was actually going on. Again, that helped. Another thing that
helped and it was quite quite a strange occurrence. I'm going to be honest with you. But again,
it sort of it to an extent made me understand that actually the scanner isn't as big and
long as you think it is because the first time one of the scanning team walked around
the back of the scanner itself and just very gently reached in and just touched the top
of my head. Now that made me realise if a person's arm and the member of staff that
did it wasn't the tallest, they weren't the biggest person ever. So they didn't have massively
long arms. They was able to reach in and you could feel they weren't at full stretch and
just touched the top of my head. And I'm thinking that means it isn't that far to the exit.
Again, it just gave me that level of calmness that made me think, well, do you know what?
Actually, I get this. I understand what the story is here. So again, it just took away
that other layer of, oh my word, this tube is huge. It's massively long. I'm nowhere
near an exit. I am near an exit because I can see the bun by my feet. It's not that
far. And hang on, now I know there's one behind my head as well. So I can get out two different
directions. Not a problem. Not a problem at all. So yeah, again, that was so, so helpful.
It was kind of, it was an accidental thing that kind of did it. It really was. It was
an accidental thing, but it worked. It really did work. And lastly, lastly, something that,
again, I'll be honest with you, was kind of to trick my brain a little bit. And all it
was was when I was told how long each scan was going to be, under count. So if I was
told a scan is going to be four minutes, for instance, I would count slowly in terms of
seconds. So I'm counting each scan. One, two, three, four, and so on to confuse my brain.
When they say at the end of the scan, okay, that scan is complete. We're now onto the
next one. Well, that scan is only taken three of the four minutes, maybe three and a half
minutes. Doesn't matter. It still took less time. So in my head, I'm going, hang on, I'm
not going to be in here for as long as I think I'm going to be in here. So again, it was
something that worked for me to confuse myself to the point of saying, yeah, do you know
what? This isn't as scary as it seems. It's not that frightening. All of that combined
got me to a point where, you know, the longest scan I've had was over an hour. And to be
fair, it didn't cause me any problem at all. You know, even when I have the brain scan,
I have a cage put over my head, which again, sounds really terrifying. It's not because
the cage can't hurt, but I have the cage put over my head. And the way I look at that is
that's just another level of safety. That's another thing that's going to protect me should
anything happen. So again, that didn't bother me. It really didn't bother me at all. Because
again, I'm telling myself and I'm explaining to myself how that is going to protect me
and keep me safe should anything go wrong. Now let's be totally honest. If anything goes
wrong in that scanner, I am not stuck. You are not stuck in that scanner. Even if the
bed doesn't move, you're not strapped down. You can crawl out of that scanner. You are
not stuck under any stretch of the imagination. You are just not stuck in there. And again,
it's something that it helped me quite a lot. It really did. It's something that changed
my thought process on MRIs. It took away the fear. It took away all the concern, everything.
And again, I'm at a point where the letter has turned up. It's hit my doorstep and I
don't care. I'm actually quite looking forward to it because I want to know what the story
is. Have any of my lesions got any worse? Have any of my lesions kind of just stopped
getting worse? Has any new ones opened? I'm not going to know until I actually lay there
in that scanner and figure this stuff out. Because again, once that's done, it's only
blood tests. And then I've got my next lot of treatment. Now again, for myself, I'm on
ocrelizumab, ocrevis. And yeah, okay, it can be. And I know I mentioned this in a previous
podcast. I'm not going to go too far into it. And it can be a very harsh treatment.
But the MRI scan, the blood tests, all of that sort of stuff, what that's there for
is to ensure the treatment is correct. It's done properly and there's nothing anywhere
that could potentially cause more of a problem. Now again, I'm going to be straight. I used
to have an absolute phobia of needles. A genuine, genuine phobia of needles. Now being diagnosed
with MS, you kind of get used to needles. You can't not. It is what it is. You know,
you're going to have to have injections, blood tests and whatever else. Just a fact. Now
there's one real way that actually I got myself, and I'm not even going to say out of the
phobia because I don't think I've necessarily cured that. But I've got myself to the point
where I'm not bothered about a needle. And I did that by way of just not looking. When
they bring a needle over to me, I know what they're going to do. I know where it's going
to go. I don't look at it. Simple as that. I just do not look at it because if I look
at it, it's real. If I don't look at it, I'm not bothered. And when I'm having treatment,
when I'm actually plugged in and the infusions going on for ocreavus, now I've got the needle
either in my hand or in my arm. I'll try not to knock my microphone everywhere. I've either
got it in my hand or in my arm. I prefer it in my hand, I'll be totally honest, because
it means I'm able to get on the laptop and do bits and pieces. But I'm not that fussed.
I try not to look at it. I'll be honest, I try not to look at the needle when it's in
there. I know it's difficult because when I'm on my treatment, it's around six hours,
give or take. But again, I try and block it out by doing other bits and pieces. And I'm
quite lucky today, I've had good people to talk to, the nurses that deal with my treatment
and whatever else have been brilliant, even to the point making cups of tea. You know,
everything, even the tiniest little thing can help. And it does. It really, really does.
So it is very much at the point now where all the fears, all the phobias that I've got,
because previous to all of this MS stuff, I've never really been the kind of person
that gets involved with anything medical unless I was a first aid or I was helping somebody
else. So to get to a point where I'm getting used to that sort of stuff and figuring out
ways of no longer being frightened of it and the rest of that, taking all of that sort
of stuff away, it's taken time. But actually, I'm at a point now where I'm confident going
into that stuff. I certainly wouldn't say I'm happy about it, but I'm confident. I'm
quite a relaxed state of it, which actually is very helpful. It really is. It's very,
very helpful because being relaxed about it, again, it takes away a certain avenue of fear,
takes away a certain level of concern and whatever else. And if you're able to do that
sort of stuff while you're calm, while you're relaxed, it's going to seem a lot less of
an issue. Now, again, I know not everyone's the same. I know my little tricks I've used
for MRIs and whatever else are not going to work for everyone. That's just a fact. As
a human, we're all different. But if you can just, even just one part of that, just be
able to use it and twist it to your own needs to kind of help you get through any kind of
fear genuinely, genuinely, it's worthwhile. And I would, I would strongly suggest giving
that sort of thing a go because again, when you actually take a step back and you look
at an MRI scanner, it physically can't hurt you. It can't hurt you. There's nothing there
you can hurt yourself on. Is it nice being in an enclosed space like that? No, of course
it's not. But is there any kind of ouchy that can come from it? Not really. It just, there
isn't really. I mean, to an extent for me, I am now, I look back at how I was previously
and think, why didn't I know all this stuff beforehand? Now I do think it's the kind of
knowledge that should be passed out and given out to be able to cut down on the amount of
missed scans because I am aware that there is lots, many, many scans go missed, which
costs money. And that money, you know, it's staff time and whatever else and, and everything
else. And again, you know, I'm not going to go into the politics of it all because that's
not my place. It's genuinely not my place, but there's got to be better ways. There's
got to be better ways. One of those ways in my opinion, and I'm just going to put this
one out there and I have said it previously, but again, it was many shows ago now, so I
just want to share it again. For me personally, I just wonder, would it be worth one open
scanner being purchased per hospital trust to be used for those that are majorly claustrophobic
and can't go into a closed scanner? Don't get me wrong for a brain scan. I totally understand
it. You're still going to need the closed scanner, but there's also going to be a large
number of scans there that are successful based on the fact they're open. Now having
been in an open scanner twice, I can say you physically, there is no claustrophobia attached
to it completely open above you in front of you the whole lot. It is comfortable. Even
if then transport to that one scanner was provided, potentially that could save a lot
of money on missed scans because again, they cost money. I'm not going to go into how much
because I don't know, but it's just another technique and another thing that could be
used to improve services and whatever else. And again, I've got to say, I'm not a politician.
Far from it. I'm not a politician. Just my thought process and somebody better than me
would probably be able to come up with reasons why one, it can't work or two, how it could
work. And if that was possible, great, fantastic. But that's just my thoughts on it. Whereabouts
are we? Give me just a second. Do you know what? I actually felt I'd probably be lucky
to do 15 minutes on today's show because it's much later in the day. Already 25 minutes.
I'm quite impressed. I'm quite impressed. Lastly, today, what I want to talk about is
something that again, and again, I've mentioned it, I have mentioned it. Something that I'm
doing to try and keep myself going and keep myself ticking over things like the gaming
YouTube. It's improving to a point now where actually I'm, I feel like I'm getting somewhere
with it. Do you know what I mean? I feel like I'm getting somewhere with it. And the reason
I want to bring that up is because again, I think it is so important to have hobbies
and things to look forward to because being able to look forward in that manner, you think
to yourself, what am I waking up for today? What am I going to do today? And to wake up
and have something in your head and go, right, that's what I've got to do today. That's
got to be done. That's really important. It is incredibly important. And even if it is,
right, do you know what? All I'm going to do today is I'm going to have a shower. I'm
going to have a bath. I'm going to brush my teeth. I'm going to do the washing up. It
doesn't matter what it is. As long as you've got something there that you can feel like
you've achieved and it could be the smallest little thing, genuinely the smallest little
thing, it doesn't matter. Something is better than nothing. It really is. And for me, the
gaming YouTube is something I'm really pushing towards. I'm trying to learn to edit videos.
I'm trying to learn everything I can. I'm trying to learn about search engine optimization,
SEO, everything like that. Because again, if it's going to help me improve, then it's
worthwhile. And again, I'm trying to do it with this show. You know, for once actually,
I've just carried on talking rather than what I've been doing recently, stopping, going
to get a drink, whatever else, come record the next part of the show. I've not needed
to actually. It's been quite fun. Do you know what? I've quite enjoyed it. I've set everything
up slightly differently. I'm hoping that I'm a bit more visible, not quite so close to
my face. And again, it's improving. It's that little level of improvement that it's
just worth finding. It really, really is. Well, I think we'll probably call that an
end for today. Really appreciate you listening. I will on the next show, I'm going to explain
to you how the scan went. And yeah, we'll talk soon. Have a good week. Bye bye.