Hello everyone, how are we all doing today? We're all doing okay. I'm back again this
week. I'm going to try and put some fun and laughter in and just have a bit of a conversation
about what I'm expecting from my treatment on Tuesday and just a few other little bits
and pieces. I'm also kind of trying to learn how to use my soundboard properly. So give
me just a second because if this goes wrong there will be a very loud... I did a good!
See I got clapped! Come on that's always a good thing. So yeah, I mean let's start with
the basics this week. Things have actually not been too bad, I'm going to be totally
honest. Not been too bad at all. I've had kind of a bit of a relaxed and chilled week.
Obviously I have now set up the just giving for my jumping out of the aeroplane. Come
on that absolutely deserves... Yeah okay. But yeah that's all set up on my just giving.
Any donations would be incredibly gratefully received. I have got a figure that I've put
which is quite high. It's a lot higher than any other time that I've fundraised. I would
love to get to £500. All of it, every single penny to the MS Society for them to use however
they wish to use in the fight against MS. Which let's be fair, that's a fight that I've
absolutely got my gloves on and I'm ready to do. And the MS Society absolutely doing
their bit in a massive way they really are. I've said many times about how grateful I
am to them and that stays. I'll be honest that really does stay incredible. Absolutely
incredible charity. But yeah I mean that's that. It's all booked so the 29th of October.
I'll be jumping out of an aeroplane. Yeah again massively looking forward to it really
am. Can't wait. Really really cannot wait. Langer airfield just outside Nottingham. Bring
it on. Bring it on. I'm not going to promise I'm not going to be a little bit worried when
I'm up in that plane getting ready to jump out. But no honestly really looking forward
to it. But anyway that's enough for that one for now. In terms as I say of the week itself
it's actually been half decent. I mean weather has been incredibly hot. Wow it's been warm.
I'll be honest with you painfully so. I've been screaming for summer all summer because
it's been incredibly wet. We get a summer and I start complaining over it. I mean come
on come on you want it you get it accept it. It's just been so humid it's unreal. It really
has been so so humid. I don't know that's standard British weather. Honestly wow give
me 25 degrees and comfortable. I'm happy with that. Really really happy with that. I'll
tell you that with a smile on my face without a doubt. But yeah I mean this this heat is
unreal. I mean I'm sat here now. If you're looking at me on YouTube I'm sat in my studio.
I've actually got the door wide open because this is like a sauna in here. It's awful it's
really really warm. I'm gonna be fair. I just without the door open I'll be honest I probably
wouldn't been able to sit and do the podcast this week because I'd be melting. And I know
I need to kind of have a check on my weight a little bit just to make sure I'm under that
15 stone for me jump. But honestly it's absolutely crazy. Crazy how hot it's been. And now we
get a bit of rain. Yes it means I'm gonna complain about the rain. I know I've got it.
I understand. You just can't be happy with the weather no matter how it is. I get it.
I get it. You know I'm right there with it. But yeah I mean in terms of how the weather's
made the MS. Because normally I don't really have a big deal if I'm honest with regards
to the hot weather. But actually this week what I have noticed is one control in my temperature.
I actually can't do it. I'll be totally straight. I really can't actually control my temperature.
I get hot and I stay hot. Doesn't matter what I do. It really really doesn't. I'm not gonna
guarantee that's an MS thing because it might be it might not be. But it's very strange.
I've never had it before where I can have a cold shower and literally within a minute
I am pouring with sweat again. It's a strange old thing I'll be honest with you. It's a
really strange old thing. But again it could be it might not be. It's causing me to get
very tired. I will say that the heat is making me really really tired. Which is awkward because
it's so hot. You go to bed and it's too hot to sleep. But I'm tired I want to go sleep.
It just doesn't play ball at all. But I'm trying. I'm trying. I'm getting me nut down
as and when I can. But again the other thing with me when I get too hot I don't really
eat much. I just don't get hungry. I don't know what it is. I happily just eat salad
solidly through hot weather. Yeah I can't figure that one out either. I really can't
figure that one out at all. But yeah again with regards to the tiredness and whatever.
Now that I do genuinely believe. That's the fatigue kicking in because just about everything
that can ache go to sleep and just not want to work. That's exactly what happens. I'm
going to be fair. Exactly what happens. So yeah I mean that I do think is weather based
and it's kicking in the fatigue a bit. Again this is all kind of new. This is genuinely
all kind of new. And it's stuff that I do need to learn. So I'm getting there. I'm
plodding along with it. I'm plodding along with it. What I've got to say. I was going
to leave it till further in the show but I've got to say. Last night Saturday night. Myself
and Lisa we had a date night. We really decided on it very very late in the day. I'm going
to be fair it was really really late in the day. The show started at 7.30 I think it was
probably about 4 o'clock we booked our tickets. There was an 80's tribute band at the local
Guildhall. And we both love 80's music. Simple as that. Absolutely fantastic. So when we
got there. Went and took our seats. And they got me right from the start. Right at the
very start I was hooked. Because they came out to the final countdown. I mean come on.
What a tune. To come out to that. That was it. I was hooked. Absolutely. I don't think
I stopped singing all night. I'm going to be honest. Every single song I was belting
out and I felt so sorry for the people behind us that I was singing. But they were singing
too. So was Lisa. It was great. And the performance was fantastic. It really was. I mean the two
singers they were so smiley. Literally every single song. Doesn't matter what the song
was. They were just smiling. They were happy. They were dancing. People say yeah that's
their job. That's what they're doing. Kind of yeah. But at the same time. No. They clearly
enjoy what they do. And that came across. And I'll be honest with you. It was excellent.
It really was fantastic. And I'll be honest. I would happily go and see them again. I really
would. There's no way I would say no. Because they were brilliant. Absolutely fantastic.
But do you know what? It's the first time me and Lisa have been out on our own. Do you
know what? I can't even tell you how long. It's been such a long time. It's unreal. So
it was great. Having a bit of time to ourselves. Absolutely fantastic. Loved every minute of
it. It was so nice just to have a bit of us time. A bit of us time. And it's not something
we need every minute of every single day. But now and then. A little date doesn't hurt
does it? A bit of happy. And a bit of reminding ourselves that actually we're not just parents.
We're still a young couple. I'll get onto the young in a minute. But yeah. No. It was
brilliant honestly. Absolutely fantastic. Loved every minute of it. Had a great time.
And again this comes back to last week on the show when I was talking about positivity.
That's how I want to live my life. That genuinely is how I want to live my life. With MS. And
this is something I wasn't going to talk about. But do you know what? Actually yeah. Because
this is me being really really positive. With MS. One thing that I've noticed quite quickly
is it is so quick to drag you down. It really is. It is so quick to drag you down. And it's
quite easy to let it. But if you're prepared to fight back. If you're prepared to say do
you know what? No. I'm not going to allow myself to let it. I'm not going to allow myself
to be a victim of it. I am going to take control. That absolutely is what I'm going to do. What
I'm doing. Because I've gone through stages. I'm going to be totally honest. Again I said
this last week. I went through stages where I genuinely I looked back at some of the podcasts
I've recorded. I'm thinking actually they're quite negative. Well last week and this week
I want to come across as positive. Because that's where my thought process is on it all
now. Is positivity. It really is. Gloves on and fight this thing. I could have easily
used a different word there. I didn't. I was impressed. Well done to me. I'm going to have
to go for let's do a. So I just got a cheer. All I can say to that is yay. Bring on the
positivity. But yeah I mean that is it. That's where my thought is. And do you know what?
My thought is there. Big time. And that kind of comes on to my next point. Which I'm going
to go with just very briefly. A nice little bit of positivity happened the other day.
Now I know I've told some stories. Some negative stories in the past about when I've been out
on my mobility scooter. Eleanor. I'm going to tell a positive story and it's only a very
short one. So I went out on my scooter the other day. Lisa went to work. I left her when
she got to work. I had a bit of a mooch around. Had a look around town. And I grabbed myself
some lunch. And I thought to myself do you know what? I'm not going to sit and just eat
my lunch randomly. I'm going to take my lunch and I'm going to sit by the river. And just
relax. So I did. And oh my word it was lovely. Really enjoyed it. I had a pizza slice. I
had a donut and I had a drink. Now while I'm sat there on my scooter. I looked down at
the river and there's some fish. Quite big ones actually. I didn't realise how big the
fish could get in the river with them. I didn't realise how big the fish could get. It was
great. And I'm just looking at them and they're quite happy just sort of plodding around.
And there was an older couple come walking past. Now the chap bless him asked me if I
was okay because obviously I'm sat there on my mobility scooter just looking at the water.
And yeah quite cheerfully explained I am fine. I was just having my lunch and watching the
fish. And this chap bless him he told me how nice it was to see a young fella just sat
nice and relaxed just sitting watching the fish and being calm. And do you know what?
One it was great that he called me young. I'll take that all day. Don't get me wrong.
I know I'm not old. 40 is not old but at the same time being called young that was brilliant.
I'll take that all day every day. But yeah I mean it was such a nice little exchange
and it was only very quick. But genuinely it was fantastic. Really really nice and it
actually put a huge smile on my face. And I know this gentleman won't be listening to
this podcast but a massive thank you to him. Absolutely huge thank you because again yes
I've talked about negative things that's happened but if there's positive and good things that
have happened you're right I'm going to talk about them. Absolutely spot on I'm going to
because it's the right thing to do and it makes sense. So yeah I just thought I'd float
that little story out because again positivity there's that word again positivity it's a
really good word that. I like it. I like it a lot. I think that's going to lead me on
to the final part of today's show. Tuesday is okravas day hopefully. I really do hope
so. But yeah I mean in terms of the treatment itself I mean this is the first time I'm going
to have the full bag. Previously the last two were half bags so I had them separate
times. Now with the full bag I'm not entirely sure what to expect. I'm hoping my body goes
oh this is nice I remember this. That's where my brain is I'll be honest with you. I'm quite
hoping that's going to be the route and do you know what I think it will be. But I'm
not actually sure how long it's going to take being a full bag again that's going to be
totally dependent on how my body reacts to it. So I'll be in the hospital for quite a
while Tuesday and what I need to also remember I need to pick up some antihistamines to take
for a couple of days after just to kind of try and ward off any of the potential nastiness
because it is something I was advised to do actually last time by my MS nurse was to use
antihistamine. Now I'm going to be honest I feel like I should be nervous. I really
do feel like there should be some nerves about having the treatment. Yeah there isn't. There
is no nerves. Actually to an extent I'm kind of looking forward to it I'm going to be
honest I'm kind of looking forward to it because again and I've said it previously I'm going
to say again and this is not me being negative it's just me being straight and honest. Over
the last month I have noticed kind of not nice effects where some of my regular issues
have seemed worse. I have kind of not felt great in myself I've felt very very lethargic
fatigued I've just not been great not been fantastic at all but I genuinely genuinely
believe that could be part and parcel of that particular gap that gets talked about and
once the treatments done it's another six months till the next one so I'm hoping then
I get sort of five five and a half six months of calm. Don't get me wrong again with my
symptoms they do not go away at all they do not go away they stay as they are nothing
is going to change the symptoms that I have but it's okay because I've learnt kind of
at this point how to live with it so genuinely it's a case of getting the treatment done
getting it sorted and getting me back to a good level whereby I'm kind of kind of set
in one place which should be lovely genuinely would be brilliant. I'm going to take the
laptop with me I'm going to take my phone with me obviously and all things being well
I'm going to do blogs I'm going to do pictures all that sort of stuff while I'm in the treatment
because what I also want to do and I know I'm going through this but all of us are with
MS we're all going through similar whether it's ocrevus or other treatments. If I can
put that out there so people can see what it is and they've not started their treatment
yet and if I can put good ideas out there good thoughts out there and don't get me wrong
not everyone's the same not everyone is going to have a comfortable experience but if I
put my honest experience out there it gives people an idea of one type of thing to expect
and actually to me I think that's a good thing I really really do I think that's a good thing
because yes there is good there's bad that's life that's the way things are but yeah if
I can just help one person have that thought process of right okay this is how it works
this is what goes on this is what kind of to expect that to me is exactly why I'm doing
what I'm doing absolutely that is the reason I am doing what I'm doing so hopefully that
can help someone again only time will tell but again with ocrevus it is quite a harsh
treatment and then that's a simple fact it is quite a harsh treatment but that's not
actually concerning me it really isn't because of the the two half bags it's kind of given
me that thought process of for five months I was what I would class I'm going to be straight
what I would class as stable yes the foot drop still there yes the numbness is still
there I will come to numbness in a second actually the numbness is still there yes I've
still got the MS hug that doesn't go away it's there on a daily basis some days worse
than others I get that ocrevus isn't going to get rid of that it's not going to cure
what's already in play but actually five months there was nothing new so I am really looking
forward to getting this bag in me and hopefully having another five five and a half six months
of like I say of stability that's the word I'm going to use I would use the word stability
so fingers crossed in terms of numbness I'm going to say this and I'm touching wood as
I speak the table I'm working on is a wooden table my hand is on it probably for about
four days now I've been able to feel my right foot properly now that is something that hasn't
happened in quite a few I'm going to go as strong as years I can genuinely feel my right
foot if it gets touched or whatever else I can feel it and I'm going to be honest I love
it I love it it's genuinely genuinely fantastic so yeah I've really got my fingers crossed
on that one if I can get a little bit of feeling back in that foot okay yeah foot drop still
there yeah whatever but I can feel the foot again it's just nothing but nothing but good
nothing but positive unbelievable unbelievable but yeah that's where I'm going to leave it
this week me talking about my foot a bit weird but you know is what it is absolutely superb
honestly again hope this comes out as positive as I've I've tried it to be because that's
where things need to go that's how things need to be for me personally I hope you all
have a great week and I will look forward to talking to you all soon and let you know
how the treatment went speak soon friends bye bye