Hello and welcome to today's show. I hope everyone's been doing okay the last week.
I must admit, me personally, I've had a few bits and pieces going on and I'll talk about that today.
What I will say, the first thing I've got to say today is the reason I did release a bit late,
because today is World MS Day. So what better time to release an MS podcast than on World MS Day.
Now, I just want to unpack that a little bit about World MS Day,
because for me personally, I think not just with MS, with all kinds of medical conditions,
anything that's a little bit rare like that, it shouldn't just be a day here or a week there or a month there
to get our voices out and try and engage people in conversations about these kind of conditions.
Because let's be totally honest, compared to the amount of people there is on the planet,
I'm not going to start spouting numbers, that's not the kind of game I play,
MS is very rare. It's incredibly rare.
And I think we've all heard it from time to time where people say,
oh, you've got MS, blah, blah, that I know has got MS. It's quite possible.
It's absolutely possible. But in the grand scheme,
there's not that many of us out there compared to the general population of planet Earth.
So why limit it to when we're actually going to discuss the condition?
And I'm not talking we should be ramming this down people's throat every minute of every day, absolutely not.
But what I am saying is it doesn't hurt for conversations to happen a little bit more regularly
or for people to just think about not just MS, but every other medical condition or whatever else
and just sort of try and gain a little bit of knowledge as to what people are handling
and what people are dealing with when dealing with the conditions.
Now then what I will say again with regards to MS, it's evil. We all know this.
It is evil. It's this condition that we've got that might let you have a few days
where actually things are absolutely fantastic. Things are great. You don't feel too bad.
You don't feel the odd pain, ache, whatever else here and there.
And then boom, it literally smacks you around the face with a wet fish.
It just comes back with a vengeance. And it makes no apologies for it.
It just comes and gets you because it wants to. Because let's be fair,
and I'm going to say this without swearing, I'm going to do really well here,
but it is a massive pain in the backside. Yes, yes it is.
And do you know what? I'm going to sort of float this one out there that, again,
it's bad for us that are going through it on a daily basis. It is absolutely flaming awful.
Also to our families, friends, anyone else around us that on a daily basis
sees what we're going through and wants to help. It's not nice for them either.
It really isn't nice for them. It's not nice for us. It's just an evil, evil condition.
Now, I ain't going to sit here and carry on being negative. No, not happening.
So what I want to do is I want to start trying to look at some of the positives that I'm doing
to try and show MS. I've said this once and I'll say it again,
and many, many people say this and it is an incredibly true statement.
I've got MS. MS has not got me. And that's what I try and do every single day.
And I will be honest, a lot of times to my own fault. It's to my own detriment very, very regularly.
Because there's days where I know I'm not doing too good, but I still try and carry on and I try not to give in.
Yes, it's not smart. I know. You can say as much as you like. I know it's not smart.
And no, no, I'm not proud of it. I'm stubborn. And you know what?
I'm going to continue to be stubborn and there's no end of us out there that are like it. Why not?
Eh, meh. We're quite able to be stubborn because we can. And that MS, you will learn. You will learn.
But what for me personally, and I know I've said many, many things that I do to try and keep myself positive.
And there is no end. Absolutely no end. I'll be honest with you. I've had some times recently, I'm going to be honest with you.
I've had some times where I've actually gone through some real negative thoughts.
Some real nasty things going around in my brain about myself and whatever else.
And I really am trying to fight that because that's not me thinking. It's not the way I think.
And for me personally, I've got to try and carry on as best I can. I really have.
But with all joking aside, and I do do a lot of joking, I do do a lot of mucking about and whatever else.
All jokes aside, I have got to start learning to listen to my body a lot more.
And I've actually got to start, through gritty teeth I'm saying this, I've got to start showing the MS a little bit more respect.
Because there is days, more than a few, where I've got to start kind of chilling out a little bit, relaxing, just sort of calming things down.
And when I need to rest, I have a rest. It's not rocket science, is it? Let's be honest.
But again, it's kind of learning. It's a learning curve.
And for me, fighting through is one of the things I've got to do to try and keep myself ticking over.
One of the biggest things that I do personally to try and keep myself going, keep myself ticking over, keep my brain going, is getting out on my mobility scooter.
Now, I'll be honest with you, this is a thought that's literally only just gone through my head.
Only just gone through my head.
And it is a case of, the reason I get out on that mobility scooter, it gives me that sense of release, that sense of freedom.
Do you know what it really is? It gives me that sense of, do you know what, you're still capable, you're still able, you can do this.
And yeah, I mean that is one of my biggest things, is getting out on that mobility scooter.
And when I first bought the scooter, my word did I not want to use it.
I was desperate not to use it.
You know, I thought to myself, what are you doing? You don't need this.
You know, just don't bother.
I was actually embarrassed. I'll be honest, I was actually embarrassed to use it.
There's a video, and I know I've mentioned it on a previous podcast quite a while ago now, where there was an incident where I was coming home on my scooter.
And some absolute muppet, and yes I'm going to use that term, I make no apologies, absolute muppet, decided to abuse me.
From his car, while I was on my scooter.
And actually, do you know what, looking back was probably one of the main reasons I thought to myself, do you know what?
No, I am proud. I am genuinely proud, really proud of my scooter, massively.
I was over the moon.
Because now I am very much at a point where my Eleanor, my scooter, yes I know, I've got to stop giving them all names,
I know, but if it wasn't for that scooter, my little toot toot, I actually wouldn't get around very much.
And to get out and clear my head like that, amazing, absolutely amazing, absolutely love it,
whether I'm just nipping to the shops for 15 minutes, or whether I'm having a ride through the park, around a river, anything like that,
it's incredible, nipping to town, whatever, come meet Lisa from work, do you know what, there's so many different things I do when I'm on that scooter.
It makes a huge difference, it really really does.
My wheelchair, again, that I was kind of weirded out and embarrassed about to start with, now do you know what, not bothered, not bothered.
Trying to learn to hand wheel it, absolutely love it.
Again, the sort of things I'm doing to keep myself ticking over, playing on the Xbox, yes I know, playing on the Xbox is not the best thing in the world to do, I get it.
It's fine, I understand, I'm still going to do it, it's fun, I'm enjoying it.
I chuck the odd video up on different social medias and whatever else, it's fine, it's fine, I understand, it's going to continue, it's fun, I enjoy it, keeps the brain ticking over.
We get into that time of the year as well where I get out in the garden and actually start doing gardening, yes, gardening, woohoo.
I know I shouldn't get too excited but I love it, absolutely love getting out in that garden.
Again, it gets my brain ticking over, sticks some music in my ears, get digging stuff up or pruning back some of the plants or planting new plants, love planting new plants, must get new plants.
I've got about three or four planters that need to be filled, must get new plants.
Yes, it's going to happen.
But again, things like that, it's the sort of stuff that I'm doing to keep myself going, to keep myself in a good position mentally.
Because again, MS, it's very, very widely known that it can cause things like depression.
Now, if there's any way at all that you know of for yourself, where you can just try and keep yourself ticking over to try and fight off something like depression, it's worth doing, it's genuinely worth doing.
And do you know what? No matter what it is that you think about doing, if you enjoy it, if it's fun for you to do, do it.
Don't be embarrassed. Just do it. Just enjoy yourself. It is what it is.
We get one life. Live it the best you can.
That's all I can really say on that. This is one life. We get one crack at this. We really do.
And let's be totally honest, we've been dealt a really rubbish hand.
Fine. Not a problem. Bluff your way through.
Bit of a poker reference there.
But simple as that, just bluff your way through.
Because as long as you are doing something to keep yourself happy, do it.
And like I say, from my point of view, there's loads of stuff.
Playing guitar.
I'm not great. Far from it.
I still do it. I still enjoy it. Because why not?
Picking the guitar up and just smashing out a few chords.
It's fun. It's just fun.
And again, it keeps my brain ticking over.
Again, there's so many things. Laughing and joking. Even if it's over the most trivial thing, if you're able, do it.
Laugh. Joke. Bear with me. Cup of tea time.
That's lovely. Can't beat a nice strong cup of tea.
But yeah, just laughing and joking. Just try as hard as you can to try and stave off.
You're never going to be able to do it all the time. I can't.
But try and stave off some of the bad thoughts.
On the bad days, embrace them.
Because if there's a bad day, hopefully there's a good day not too far around the corner.
And it's those good days where you can look at yourself and say, yeah, I've got this.
I have absolutely got this.
Because again, I'm going to say it, we've been dealt a bad hand.
You can't say we haven't.
But you know what? Again, I'm only going to talk for myself here.
Me, I like to try as hard as I can to keep things going.
Because I ain't never going to back down to this.
It will have its days. It absolutely will have its days. There's nothing I can do to stop that.
But in the long term, I'm going to fight those days and I'm going to try and make the next one my day.
I don't care how I manage to do that.
And like I've said, whether I go out on the scooter, whether I do some gardening,
whether I get the guitar out, whether I play Xbox, whether I spend time with family.
Something I've not done for a little while actually. Whether I write a poem.
No, I'm not a poet. I know my poems are absolutely awful.
Do you know what? I enjoy writing them so I'm going to do it anyway.
But again, those are the sort of things for me that keep me going.
And if it's my way of sticking two fingers up to MS and saying to it,
F you MS. I did well then because I really did feel like swearing at it.
I didn't. I'm impressed. I'm going to do it. I'm going to pat myself on the back.
That's as good as it gets. That's a pat on the back.
But yeah, I mean anything like that, do you know what I mean?
It's very much a case of try as hard as I can for me not to let this thing beat me.
If we was in a fight, it would put me down from time to time.
I would put it down from time to time.
But I can tell you now, I damn sure ain't going to give in unless it offered to buy me a pint.
Might have to rethink it then but let's not tell it that.
Anyway, cup of tea.
But yeah, I mean, like I say, that's my thoughts on World MS Day.
I really wanted to get some thoughts out there where I'm trying to get myself back to being me and having a bit of fun.
Because if I'm not having fun, what am I doing?
Being miserable.
Yes, I said it. I admitted it. Yes. Yes. Miserable.
Miserable ain't me.
I'm wondering if that comes across in these podcasts.
Answers on a postcard please. Am I miserable?
Yeah, I'm waiting for the front door to start knocking with a postman with a big bag of postcards going,
You're miserable. Yeah, I can't believe it either.
I know. But there you go.
But yeah, I mean, I've said it a million times on these podcasts.
I really would like if anyone can get in touch with me on my social media accounts or on my email account,
which is mike at Mike's MS journey dot com. Drop me an email. Ask me some questions.
I want to start answering some questions on this podcast.
I'm here to talk. I'm here to get my story out. Part and parcel of my story.
I'm going to tell this one today.
I had a meeting today. I'm not going to explain where the meeting was, but I had a meeting and.
I have to say, in the place where I was to have this meeting, two really nice people that I've spoken to, absolutely lovely.
It was nice. It was nice to have a conversation.
But it kind of got round to the possibility that I might be able to take some courses to change my employment prospects.
As we all know, I've explained that I'm no longer in work due to the due to the MS.
It's another thing you took from me and not very nice person MS anyway.
But there's things out there courses I can do now.
The one course I wanted to do, unfortunately, isn't being done in my area.
I've been on and checked, but there's three others.
I've chucked out an application for.
To kind of try and grow my skills a little bit and potentially look for different types of work.
I'm actually really quite excited at the prospect.
I really hope at least one of them comes off. I'm going to be honest with you.
Because I would love to have a crack at changing my changing my skill set.
Making myself have a different possibility because I'll be straight.
There's no way I can go out working full time anymore.
Not a chance. My levels of tiredness, all that sort of stuff, the pain, just just everything.
It just isn't going to happen. I'm honest.
I'm straight down the line. There's not a chance I can do it.
If I was to work an eight or nine hour shift, I think probably after about two hours, I'd probably be a kid in a corner somewhere.
Can't help that.
But if I'm working from home where I'm not having to travel to and from all that sort of stuff and potentially maybe freelancing.
Maybe. Which would give me the opportunity to kind of broaden what I can pick and choose to do time frame wise.
Actually, I'd like to do that. I'd like to do that quite a lot.
So yeah, here's to the possibility. I really, really hope it comes off.
I'm going to raise a teacup to the possibility.
There is nothing better.
But yeah, I mean, if that opportunity comes up between 12 and 16 week courses, I am absolutely going to rip arms off for the possibility to do it.
I'm going to say that because I want the opportunity. I want the opportunity to have a new outlook when it comes to potential work.
Because what I don't want to do, and I'm going to be honest, said it earlier, MSA very friendly.
It's taken away my job that I've done for nearly eight years.
It's taken away the career that I've had for 20 years of my life.
Do you know what? I want the opportunity to try something new. I want to get back out there. I want to be me and to be me.
I need to be in the working world and I need to be trying my best.
But I need to do that in a different way because my life is it's evolved a little bit.
It's going to be the right word. It's evolved to the point I can't do what I previously did.
So let's do something new.
Here's hoping.
But yeah, I think that's pretty much where we'll leave it for today.
Thanks for listening.
And as I say, World MSA.
Yeah, what I will say, I've absolutely loved seeing all over social media,
people posting up stories about how they cope with MS,
explaining how they got their diagnosis, all that sort of stuff,
and seeing the care that everyone has got for each other.
Absolutely superb. It's a beautiful thing to see.
And each and every one of you out there, thank you.
Genuinely, thank you.
Well, I hope you all have a really good week.
I will speak to you very, very soon.
Have a good one. Bye bye.