Well hello, I hope everyone is doing okay.
I've got to say this, I've got to get it straight out in the open.
This is the 50th show. 50th. 5-0.
I'm going to be totally honest, I am actually really quite proud that we've got this far with it.
50 shows, honestly. Me, C-It, chatting around just randomly.
50 shows. Anyway.
So on the show today, what I really would like to talk about,
I'm going to put this out straight away, I will apologise for any background noise or whatever else.
I am sat in the shed slash studio slash whatever you want to call it room.
I've left the door open because the weather out here is lovely, it's nice and cool.
It's not hot, not cold, it's just beautiful.
So do you know what, I kind of fancied a bit of breeze coming in.
So yeah, I'm sat here with the door open.
So big apologies for any noise in the background, but
do you know what, it is what it is.
So yeah, today really what I want to talk about
is I want to sort of do a recap of everything that's gone on over the last bit of time.
And then I'm going to tell a little story, anyone on my social media accounts will have heard this story,
of something that happened to me when I was out on my mobility scooter just a couple of days ago.
And I'm also going to discuss something that's very, very new actually,
probably started happening in the last hour that I've never felt before.
So, bit of me and we'll get it all done.
But firstly, I need a bit of my drink, I'm gasping.
Cherry flavoured drink, fizzy drink.
Yeah, just yes, all ends up yes.
So, let's start with a bit of a recap over the last 50 shows.
Where, let's be honest, this podcast started really with me just putting a post up on my personal Facebook page,
explaining to people about the diagnosis that I'd had for MS.
Just to kind of get things out and stop the annoyance of every time you see someone,
oh yeah, I've had this diagnosis or oh you're right, you're not looking too well.
That way I could kind of cut everything out.
And once I'd done that post, it was suggested to me, as I've mentioned before,
about actually doing it as a bit of a regular thing, making a podcast about it.
Well, here I am.
Like I say, it's probably not far short of a year now that this show's been going.
And at the start, I'll be honest with you, I really didn't quite know what to expect from it, how to do it or anything.
And I still don't really know too much about how to do it.
That's cold, old fact.
You know, I still don't know massively what I'm doing here.
I still don't do any major editing. I do little bits and pieces, but nothing major.
But yeah, I mean, all I wanted to do really is just sort of get the word out there about MS.
Because, let's be totally honest, unless you've been around people with the condition or you've got it yourself,
not many people know a great deal.
And I'm going to be honest, I still see it quite a bit on social media where people that don't know go,
oh, well, if you change your diet, then actually you'll cure it.
Absolutely not. Biggest load of rubbish you could ever say.
And I do keep quiet when I see it on social media, but quite a few times I do really want to post and say,
are you for real? Because, let's be honest, there is no cure.
That's fact. There is no cure. There are these things out there that can make it easier.
There are these things out there that can help and maybe slow the roll a little bit.
Other than that, that's it. There's no cure.
But yeah, I mean, I've gone personally from being able to walk a mile, mile and a half to and from work to I don't work.
My work is this podcast, thinking about what to do on the show, all of that sort of stuff.
But really, all of this stuff, the website, the social media, that's kind of my job now.
And it's something I love, absolutely love doing.
It fills me with pride. It fills me with all sorts of warm, fuzzy feelings.
But no, genuinely, absolutely love it. Really, really do.
And again, I mean, I've gone from talking on this podcast about treatment and the treatment that I was expecting,
eventually getting that treatment after really having to fight for it because it didn't come easy.
And even now, I'm very much of the thought process that I've been told by my MS team,
my EDSS score is between a six and a six point five.
If I should get to seven, they will be withdrawing the treatment.
The treatment I'm on is the ocrevas, ocreluzumab, which again, it's a bit of harsh treatment.
It goes in and it causes all kinds of...
It does plenty of work trying to stop certain cells attacking each other in your immune system.
To be honest with you, I'm in an army as to whether actually it would work.
But as I've said on a previous show in the last week or so, I've actually started to feel quite rough.
And that's kind of getting a bit worse and worse in terms of pain and whatever else and the issues that I do have,
which I will talk about in a moment. They all seem to be kind of getting a bit worse.
I'm about four weeks out, roughly four weeks, three, four weeks out from my next treatment.
The longer it goes, the more I'm thinking actually, and I'm going to use the term, the crap gap.
I am wondering actually whether, yeah, that could be something that I may well be dealing with
in terms of how things are, the way things are going.
We'll talk about very quickly the main issues that I have as part of MS.
The biggest one really is my mobility issues.
As I said a little while ago, I've gone from being able to walk to and from work to I can walk
as little as a few yards until pain, tiredness, all sorts kicks in.
And I will use the word fatigue. Fatigue jumps in there and it does what it's got to do and stops me carrying on.
I do try and fight through sometimes quite stupidly, I'm going to be honest, let's be totally straight.
But I have a go and I try my best and fail miserably quite regularly.
But I try. So yeah, you've got that.
The foot drop that I've got on my right side is quite severe.
It is quite severe. And again, anyone on my social medias will have seen a video that I put up when I was given my Fez machine.
Which, let's be totally honest with you, that thing is an absolute lifesaver.
It really is and I've got to be straight on that incredible machine. Absolutely fantastic.
Without it, walking safely just doesn't happen.
So there's that. I deal with water drop type feelings on the top of my head.
My back, I've got quite bad lower back issues.
Numbness in my legs and my feet is honestly a big problem.
A real big problem at times. I just genuinely can't feel a thing.
I mean if I was to sit here now and just pinch myself on my leg, I wouldn't feel it.
I really wouldn't feel it.
So again, that's not exhausting all the problems I've got. That's just explaining some of the main ones.
Which, I do try my best to try and overcome.
Because why wouldn't I?
I don't want this thing to win. I really don't want it to win.
So I will keep fighting on because that's just what I want to do. That's who I am.
But yeah, I mean that pretty much, so I don't want to go too deep.
I don't want to sort of start coming across like I'm bleeding or feeling sorry for myself.
Because I'm not. So all I'm trying to do is the 50th show.
So I thought it was only fair to do a bit of a recap.
But in terms of what I've explained about an issue that started in the last hour or so.
Again, I had my dinner. It was beautiful. Absolutely gorgeous.
Sausage and mash.
Lovely bit of gravy on it.
I got through nine sausages.
Nine.
And a big chunk of mashed tater.
It was gorgeous. I've got to say it was beautiful. I thoroughly enjoyed it.
But anyway, once I've eaten that.
And I've had an issue all day.
We'll start with that first.
This issue that I've had all day.
Give me a second. I'm just refreshing.
Let's start.
I'll explain the issue I've had all day.
For some reason actually I was.
I'm going to say fatigue was kicking in again.
And it was around midday the time I woke up.
Myself and Lisa, we had to nip up to the local shops just up the road.
I jumped on a scooter. Lisa walked.
And we got up there.
From the minute I got out of bed, my legs were very wobbly today.
To quite a bad extent, I'm going to be honest with you.
It had been a very long time. They've been as bad as they have.
And as we're walking around the shop.
Normally I would go one stick.
And then normally I would have the fez machine on.
I didn't put it on today.
I was trying to sort of hurry myself up to get out.
So we could get these bits.
So that's on me.
But as we're walking around I can feel myself really struggling.
Really really struggling.
I've got both my crutches.
And we get outside the shop.
Now as we stood outside the shop.
And I'm just putting my crutches back on my scooter.
It was very very apparent that there was a problem.
And the problem was.
My right leg had tangled somehow.
Around behind my left leg.
And I very nearly went over.
I managed to get one of my sticks left in my hand.
I managed to jam the stick on the floor.
And hold myself up.
And for some reason I couldn't properly speak.
I tried to ask Lisa for help.
But actually no words would come out.
And I tried to pull my right leg back round.
And as I did that I didn't realise that.
The crutch I jammed on the floor.
I'd actually jammed it in between both my legs.
And as I pulled my leg round it obviously got caught on the crutch.
And made me fall backwards.
Now I'm very lucky that I managed to stop myself going onto the floor.
But I did thump my back quite hard actually.
On the wall of the shop.
Which hurt.
And I think I may have also twisted my right knee a little bit.
Again, there's nothing major.
But it did hurt.
So that kind of happened.
And I must admit.
It frightened me a bit.
I'm going to be honest.
I'm going to be totally straight.
It did frighten me.
Because it's been a while since I've had that kind of problem.
And I'm kind of thinking to myself.
You know it has been a while.
Although I know it's what happens and whatever else.
Yeah it was frightening.
It actually was frightening.
I think it frightened Lisa a little bit as well.
Which kind of upset me even more.
Which I know it shouldn't.
And bless her heart.
She did everything possibly that she could to get me back on my scooter.
So I'm sat down and safe.
She was incredible.
I will say that.
Absolutely incredible.
The way she sort of helped get me right and everything else.
And then we come home.
And I sat down.
I spent the day.
I sat playing Xbox and whatever else.
Creating a bit of content for YouTube.
Doing some YouTube shorts for Fortnite and what have you.
And then it came dinner.
Enjoyed dinner.
Again went and sat down because of how wobbly I was.
And I fell asleep.
Now I was probably only asleep for about 15 minutes tops.
But when I woke up.
And even now I've got this issue.
Where I woke up and all over my body.
Internally it feels like things are vibrating.
Now I don't remember ever having this feeling before.
And it's not.
I can't really explain it.
I'm going to be honest.
I can't really explain it.
But it's one that's concerning.
Because it's new.
It's not something I've done before.
I've not had this issue.
It's one that I'm monitoring quite closely and hoping it's going to stop.
My fingers are crossed because you just never know dear.
Let's be fair.
But yeah it's a bit strange.
I'm going to be fair.
It really is quite strange.
But.
I'll try and get used to it and push through and hope it leaves me be.
But yeah it's really strange.
Everything vibrating.
Honestly it's not even as if it's shaking like a tick or whatever.
It just genuinely feels like there's something in there vibrating me.
And it's all over the body.
But yeah.
Strange stuff.
MS.
It goes hand in hand.
It does go hand in hand.
But we'll come back to my story about what happened to me the other day.
Right after I've had a lubrication break again.
My drinks in front of me.
It's cold and I quite fancy drinking it.
Can't beat it.
So.
Back to what happened to me the other day.
I'm just moving my leg.
A bit painful.
I was out on my scooter.
And I was thinking to myself.
I did have the thought process of maybe changing my scooter.
To one that's a bit smaller and a bit more practical for fitting in a car.
Now.
I'm waiting at a crossing.
I'm thinking.
You know.
Cross soon not a problem.
Until a comment was made about me.
Looking basically looking a bit young to be in a mobility scooter.
From my point of view you know I can't be bothered to argue with people.
So I sort of just made a bit of a.
A gentle a gentle fielding of it.
I just basically made it clear that you know.
It is what it is basically.
And then a comment came back at me.
And basically saying how.
They can't possibly be anything wrong with me.
Because I look too well.
Yeah.
Again.
Not an argument.
I've always been in my past.
I've been a little bit bitey and a bit argumentative.
Not anymore.
I don't play that game now.
So I basically just thanked them for their opinion.
Saying I look well.
Saying I look young.
You know I appreciate it.
And carried on with my day.
But.
This is where I'm going to get a little bit.
A little bit more sort of out there and whatever else.
Why would you make a comment like that to someone.
Genuinely.
Why what could make somebody think that's an OK thing to say.
Now.
I'm not one of these that's going to sit here and go I'm so offended.
But genuinely.
If you said that to somebody else or if I was having a bad day.
And you got a nasty comment in return.
I'm pretty confident.
That would then be all why you're being mean to me.
Why do people feel the need to make a comment.
That just doesn't need to be made if you want to say that in private to a friend or whatever else.
Whatever I personally don't care what you say.
If I can't hear it.
If I can't hear it it's going to make no difference to me.
But you make a comment like that.
Genuinely come on think it out.
Totally unnecessary.
Let's be totally fair.
Not every disability.
Is immediately obvious when you look at someone.
It's just not.
It just isn't.
So.
All I can say is just have a bit of awareness about.
People.
And just have a little bit of a thought on.
Is my comment I'm about to make is it actually worth making.
Or shall I just keep it in my head.
Because I think most decent people would go.
Oh actually.
Yeah probably.
Probably not worth saying.
But it was said.
That's what it was.
And again the more I think about it the more I think to myself.
Just think before you speak.
It really isn't hard.
It's genuinely not hard.
And from my point of view.
At least I filled it in a manner I did and I didn't kick off and cause a problem.
Because let's be totally honest.
Some people would have done and they would have been right to do so.
Be nice.
It's not hard.
Think about people.
It's not hard.
And the old chestnut.
Treat people how you'd like to be treated.
I mean there's not really much more I can say on that to be fair.
But what I want to do to completely finish off this 50th episode.
Which again I'm going to say I'm so proud to have got to this stage where 50 episodes.
It's taken a lot of effort.
It's taken a lot of time.
It's taken a lot of work.
And I've loved every minute.
I've said that earlier on.
I've loved every minute of it.
And I'm going to continue to do it because of how much I enjoy it.
Because let's be fair.
And again I know I've made mention to mental health.
This is one of my ways of fighting back against mental health as well.
Because I'm actually talking about things.
I'm getting things out there so that they're not actually stuck in my head.
And at least these days I know there is a brain in there because an MRI has proved so.
So at least I'm creating a bit more space in there.
Not that it needs much more space.
It's not particularly full up anyway.
But anyway.
It really is a case of 50 episodes strong.
I'm still learning.
I've got a lot to learn.
I really want to get to a point where we are talking interviews and things on this show.
Because again I think that would help people.
It would help me.
It would help others.
So once I've learned that.
It is going to happen.
You're just going to have to bear with me because I am not that technologically advanced yet.
But I will get there.
I will get there.
But yeah.
You know 50 episodes.
I am massively grateful to each and every one of you that tunes in and has a listen.
Because listening to me nattering away for like over 20 minutes ago once a week.
And again soon it's going to be twice a week.
Yeah.
You all deserve a medal.
You really all deserve a medal.
But yeah genuinely thank you.
Thank you all so much for listening in.
Massively appreciated.
And I genuinely hope that this helps someone down the line.
And I know I have had messages telling me that this show has helped.
And again that makes me feel good.
It really does.
So thank you all very very much.
Thank you for listening.
Thank you for being part and parcel of this journey.
I have added a new section to my website which is fundraising for MS.
As I've said previously you know I do what I can.
Not massive amounts.
But whenever MS charities are doing fundraising events I try and take part as much as possible.
And it just so happens we're a few weeks away now from the walk in London.
Again I've mentioned that previously.
So if you are in a position to donate.
Myself, my dad and my brother.
We will be in London for that walk.
Well I'm going to say it.
If there's anyone at the walk that recognises me from this show or social media or whatever else.
Pop over, come and introduce yourself.
I'll quite happily have a conversation.
I'll quite happily properly introduce myself.
And we can have a bit of a chat.
Not a problem at all.
But yeah myxmsjourney.com.
Fundraising for MS.
If you're able.
Even the smallest little amount would be massively appreciated.
And hopefully.
Hopefully one day all this work these charities and scientists are putting in.
Hopefully it can have some real positive effect on this condition.
We will call it this condition.
Well I think I've kept you long enough.
Thank you very much.
Again I'm going to say that.
Thank you so much for listening in.
It's massively appreciated.
And I'll see you on show 51.
Speak soon.
Bye bye.