Hello and welcome back. Here we are for another conversation. I hope everyone's had the best
week they can possibly have. Mine hasn't been too bad, not too bad at all to be fair. Today's
Sunday, last night, Saturday, myself, Lisa and my dad, we went out to a Carpenter's Experience
show. It was fantastic, I'll be honest. I'm not going to dwell on it too much, but absolutely
brilliant night out. Thoroughly enjoyed it. The guitarist at one point playing a guitar solo with
his teeth. Incredibly impressive. I've got to say incredibly impressive. I've been to plenty of live
gigs in my time, but I've never actually seen somebody play a solo with their teeth. I've seen
videos of Hendrix doing it. Never seen it in person. So yeah, I got a little bit excited.
I was a little bit excited, thoroughly enjoyed it. Absolutely quality show. Today, I want to
really touch on mobility aids, walking aids, that sort of stuff. Because I do know there is people
out there, me included. But when it's come time to accept that actually you need to be using
mobility aids, we kind of find it a little bit difficult. It's quite hard to accept. Again,
believe me when I say I totally get that because I've been there myself. And at times I'm still
there now. Because it's a difficult thing to accept. Because it kind of, I know with me,
when it first got to that point for me, it was very much a case of, I felt like I shouldn't need
them. I felt like it was me kind of giving in, in a way. And I didn't want to do that. I wanted to
very much be kind of person that just carried on and, you know, whatever were the consequences.
And I'm well aware there is a lot of people out there with the same sort of thought process. And
there's definitely nothing wrong in that. But when the time comes, and you're at a point where you
really do need to give in for your own safety, for your own benefit, actually, it really isn't
that bad. It really genuinely isn't that bad at all. From my point of view, in all fairness,
the walking aids I use, I use my crutches. And I have to say the crutches that I got from
callcrutches.com, absolutely superb. The extra sort of bits on the hand grip itself to sort of
mould itself into your palm. It has taken it to a whole new level. The comfort is unbelievable. And
the ones I've got, they're just a plain black pair of crutches. Do you know what, I think they
actually look really nice. They feel nice. They're comfortable. And without them, at times,
certainly out of the house. I wouldn't be walking anywhere. I'm honest. I'm quite honest on that.
I wouldn't be getting around, not safely. So yeah, I mean, I've got crutches. Again, other people
will use walking sticks. Whatever works for you, whatever you're comfortable with. And that's the
whole point with mobility aids. A lot of it is down to your own personal comfort. Because me,
crutches. Somebody else sticks. For me, the reason I like crutches is because the ones I've got sort
of go round and they sort of curl round my arm, upper arm, just below the elbow. And actually,
it makes me feel a bit more secure. Makes my arm feel a bit safer. Like it's not going to fall
away, not going to fall out and make me fall over. So that's the one for me. But again, when I first
started using them, when I first got them, I kind of kept them hidden away. I wouldn't use them and
all sorts. And again, a lot of that came down to kind of me thinking, why should I use them? I don't
need this sort of thing. I did. And it was only when I started using them properly out of the house,
I'm thinking, do you know what, what was I thinking? What was the thought process going through my head
of, I don't want to use these because honestly, I couldn't be without them now. And my advice to
anyone with regards to that is don't worry about other people. Worry about yourself and what's
safe for you to do. And if that means using mobility aids, you use them. And you use them with
pride, you sort of sit there and you think to yourself beforehand, what's best for me? Forget
everyone else. If anyone else has got a problem with it tough, do one. Because if that's what we
got to do to be comfortable and to get around, let's do it. So again, with me crutches. I've also
got my mobility scooter, Eleanor. You'll see me and then I'll be gone in 60 seconds. If you know,
you know. And again, that was quite a tough one. I'm going to be honest, when when we first went
out, and it was sort of a bit of a an off the cuff, we went out and there was a place in town,
mobility scooters out front went and had a little look. I've been looking at some in another shop,
where you use your PIP money to effectively rent the machine. And to be honest, when you think
about it, to me, that makes no sense at all why you would do that. Because actually, all you're
doing is giving back that money that's there to try and help you support yourself. So for me,
I just I couldn't I couldn't justify that. I really couldn't and the machine I got. Absolutely
fantastic. Really, really is fantastic. Just gets me from A to B. And to be honest with you now,
without that machine, me going out on my own, I would be housebound. I'd genuinely be housebound.
There's no way I'd be able to walk even to the local shop, which is a couple of streets away,
it's not a chance I'd get there. No way. So again, when I got that, I was very self conscious,
very self conscious. I didn't really want to use it. And the first time I actually brought
myself home on the scooter, some absolute idiot decided to make a comment to me. They were
driving in the car driving past and they made a comment about me being on the scooter. And you
know what, actually, that helped quite a lot because what it did is sort of lit a bit of a fire in me
to go, do you know what, my friend, shut up, crack on with your life. And let me do what I need to do
to carry on and just be me. And if that version of me meant using the machine to get from A to B,
so that I can get out and about, that's what I'm going to do. And do you know what, honestly,
I think in all fairness, if it wasn't for that person making that comment so early in me using
the machine, I think I probably would have struggled to actually carry on in the early stages. So it
in a way, it kind of helped. So again, I mean, with regards to mobility scooters,
actually so much help, it's unreal, genuinely so much help because you jump on it and you can
get places that you know what, you're probably going to get to any other way. So for me personally,
for the money I paid for my machine, and I'm not going to say exactly how much it was,
but actually it wasn't a great deal. It was the best thing I could have done. It really was the
best thing I could have done. Again, what I've also got, I've also got my self propelled wheelchair,
which I'm at this point, I'm still sort of learning how to wheel it myself. Thankfully,
I've got a fantastic support network who helped by wheeling me about when it's necessary.
But again, that's something that I felt very, very strange about using at the start.
But now, I'm actually quite proud when I see it. I've got myself me me fingerless gloves with
a bit of padding on the on the palm part of the hand. And I'm trying really hard to learn
how to actually maneuver it myself. And I enjoy it. I actually find it a bit of a challenge to
to learn what I'm doing. Because again, for me, I've accepted. That's what I've got to use. I've
got no choice. I've got to use this thing. So if that means accepting a challenge and saying,
and saying, right, okay, you know what? Yeah, I've got this, I'm going to do this. Let's
let's carry on. That's where I am with it. And that challenge has been gratefully accepted.
And I am pushing on and I'm determined I will get there with it 100%. Because it's part of it
what I am now. So again, that chair, lovingly named the DeLorean. Again, if you know, you know,
on top of that, what I've now obviously got that I've been mentioning a lot lately is the FES
machine, the FES machine. I will say for that, I mean, he's just changing the game. It really
is massively, massively changing the game for me. Because, okay, I cannot walk any further.
You know, it's been not two and a half, nearly three weeks, I've had the machine now.
But what it has done, it means when I am walking about, I am actually really confident,
walking really, really confident. Because the foot doesn't drag. And if it does start to,
because it gets tired, I can crank it up a little bit. And it's absolutely a bit harder.
So again, the foot lifts. So the confidence is there. And because I'm feeling more confident with
it. It's making me feel better about what I'm actually doing. So again, there's that thing
whereby I'm using a mobility aid. And it's not only is it helping me, it's giving me confidence.
And let's be fair, a lot of this stuff is confidence. For me personally,
there's not a lot in all fairness that makes me now go, oh, well, I'm not so sure. Should I do
that? Should I do that? Should I use that? No, no, no, if I've got to use it, I'm going to use it.
Because all that matters at the end of the day is what helps me. And what helps me is using these
mobility aids. And what I'm trying to get at, I know I'm sort of going a long way around it,
what I'm trying to get at is I'm well aware there is people out there that,
like I was at the start, I'm going to use the word kind of embarrassed about using these things.
Well, do you know what? Don't be. And I know that's easier said than done, but I've been there.
I've been there and I've had days where I've in my head been swearing and all sorts, absolutely
positive, I'm not using that stuff, not a chance, no way. Do you know what? The only person I was
actually hurting was myself. Simple as that. Why the should I care what other people think
if it means I'm actually getting a benefit out of it? Cold hard fact is I shouldn't care.
And you know what? I actually don't care anymore. I really, really don't.
People can say what they like, they can think what they like. If it means I'm not going to
think what they like, if it means I can get about and I'm comfortable and safe,
and I'm able to just be me, whatever other people's thoughts mean absolutely nothing to
me in that instance, not even in the slightest. That's what I'm trying to get at. I'm trying to
sort of help everyone see that, yeah, okay, at the start, it's not a nice thing. It's something that
you know can make you make you feel a bit low. But in actual fact, in the long run,
you're going to benefit. You will get the positivity out of it, you will get the good out of it. And
I'm going to not swear. But why I'm going to say is if anyone that tries to put you down for it,
because we need these things, we've got to use these things, and we're going to be proud doing so,
because it means we can continue to be the person we want to be. It's that simple. It really is that
simple. And if anyone that says differently. Yeah, that's probably the closest I've ever been in
like this 45 shows now. The closest I've ever been to actually using a bad word. Wow. But anyway,
let me have a sip of my drink and we'll go on to the next part of the show. Give me a second.
Bit more than a second. Right, so I'm just going to change my seating arrangements ever so slightly
because I want to get comfortable. So the next part of the show is going to be the pretty much
the bit that's there every single week and I'm just going to give a bit of an update on myself.
It's not been a bad week. There's been a lot of bits and pieces that I've needed to get done.
And believe me, I haven't done a massive amount of these bits and pieces because
I just can't. So to those that have helped, you know exactly who you are.
Massive, absolutely huge thank you. Can't thank you enough. Genuinely can't thank you enough.
But what I'm noticing quite a bit is when it's when I'm overdoing things, when I'm sort of
doing bits and pieces I know I shouldn't be doing like the other day, I cleared stuff out of our
bedroom and a couple of bits were quite heavy so I carried them out. It's not the smartest thing
for me to do anyway but after I've done it I was absolutely exhausted. I mean I was completely out
on my feet. I could have just gone to sleep there and then. Today there's bits and pieces
that you know doing the driveway and in all fairness once I'd finished de-weeding the driveway
I came in, Lisa's cooking dinner and I just fell asleep. Turned the Xbox off and I just fell asleep
and I was fast off. Trust me I was out like a light. But yeah I mean anything involving me
putting any kind of effort in it really is. It's absolutely doing me in.
And it's it's kind of hard because for me I know I should be able to do these things.
But at least the old me should have been able to do these things.
Whereas this new part, I've said it a million times and I know I'm going to say a million more
I know I'm going to say a million more but I really should be at a point where I'm understanding
where the stop button is for myself because in all fairness I don't tend to
to hit the stop button when it's necessary and I push myself to the point where actually it's
too far and I'm going to suffer. So when I am suffering like I say fatigue is a massive
massive issue for me at the moment I really am struggling with that.
The other thing I've been noticing when I'm overdoing it and I again I know I've mentioned it
previously but it's become a little bit more apparent is these electric shock panes.
And I've been getting them sort of all over the place and I'm talking my legs, arms, my face
and again I know I've mentioned in a previous show that the ones in my face kind of were there
but not there for a little while. They've been coming and going a little bit more recently
and again I put it down to me overdoing stuff but yeah literally it genuinely feels like
somebody's running past me and sort of zapping me with a cattle prod and then running away
and it is so weird so much discomfort and I'm going to say it actually genuinely hurts a lot
and it's the ones in the face really that kind of hurt a bit more they really do.
The ones in the legs because I've got quite a bit of numbness in the legs
just feeling something is kind of a bit better than feeling nothing at all.
My back at times has been to the point actually I'm struggling to stand up.
I will continue to do it anyway but it really is at a point at times recently that that's been
difficult it's been very very painful and it makes me feel like I just want to fall over.
So again a lot of that kind of stuff is just kind of a little bit more of a
pain in the ass. So again a lot of that comes down to the overworking
self-inflicted I totally get that totally get that self-inflicted yes I know I know I know
but I can't help it I can't help that and I've said it a million times I'm gonna start helping it
and I just don't I continue on so you know here's what it is but yeah I mean that's kind of where
we are with it in terms of what MS is is doing to me and being totally honest in the last week
or so it's given me a bit of a kick in but I'm still standing I'm currently sat in a chair so
that's not kind of true but I'm still going I'm still carrying on and I'm still being me.
That's kind of where I'm going to leave that at the end of the day I don't want to dwell on it too
much. The next just very quickly I'm just going to say that I've updated the website a little bit
it's an MS website and the one thing that's been missing is my explanation for what MS actually is
and I'm not going to discuss that on here it's on the website and it's something I was really
nervous about putting on there because what I've always kind of tried to shy away from is
any kind of explanations like that because I'm not medically trained I'm not medically trained I
am literally just somebody who is going through this condition so yeah there is now a little
section on there for what MS is like I say if you do go on and take a look the website myxmsjourney.com
if you do take a look please be gentle with me because as I say I'm nervous about that part
but I felt it was time to put that on there what I've also been doing I've actually been blogging
a bit more the last week or so I've been doing a bit of a little bit of a little bit of a little
bit of blogging a bit more there's three straight days actually I wrote blogs three straight days
that doesn't happen but I've been really enjoying it because I've got this new laptop set in front
of me and it's a bit better laptop it's a much better quality laptop and it makes typing and
writing so much easier it's really nice to actually use in that respect so I'm going to use it because
I can well that's kind of as far as I'm going to go with it today I have got some other thoughts
for things in the pipeline oh just very quickly actually the 14th to the 16th of this month so
next weekend or this coming weekend now I am going to be streaming on Twitch for the MS trust to try
and raise money for them I am on just giving at my XMS journey on just giving if you are able to
to donate a little bit don't go over the top please whatever you do just if you can afford a
little bit I would be incredibly grateful because at the end of the day any MS charity to me
would be naturally close to the heart because if we can raise money and start
funding research into MS you just never know it might get to a point maybe one day where
people don't have to suffer with this evil evil condition and it is evil and I've said that
and I will say again and I'll say again and I'll say again this condition is evil it is insidious
it is just downright awful and that's me being really nice trust me I could sit here and say
an awful lot about what I think about this condition I'm not going to do that because
I'm trying to be as polite as possible but trust me when I say this thing is it's just evil
but yeah if you're able my XMS journey at just giving I would appreciate it closer to the time
on the website I will on my website I will actually post up all my twitch details I'll also post it up
on as many of my social media accounts as I can so if you want to come and join me watch me get
absolutely annihilated at fortnight play a few rounds of golf and maybe play whatever else
we'll see on that one but I also might just jump on and I might if I can I might actually try and
record a podcast live yeah that sounds as scary to me as it does to everyone else but I'm going
to try can't promise it will work well now I am going to let you go thank you very much for
listening I know this has been a bit more of a talky talky talky show but there was little
bits that needed to get out have a really good week and I will talk to you soon bye bye