Well hello, how is everyone?
It is Christmas, sat here Christmas Eve
I can't wait for tomorrow. How is everyone?
How have you all been? I know it's been a little while
since I've come on and said hello and explained how things are
but I'm trying to change things up a little bit I'm trying to make
this podcast a little bit more
entertaining for everyone I'm trying to
to change how things are done I'm trying to
properly learn how to edit because let's be totally honest I've been doing this
for over a year now
I've never actually learned proper editing or anything like that
which I wouldn't mind figuring out how it's done
if that means I can improve
how this all goes for you all listening
well as I've just explained there
it's going to be new ways of doing the podcast
I'm going to be doing it, I may mean to do shows a little bit longer
you know doing 25 minutes half an hour
great it's great fun but actually I'm not going to just aim for that now
I'm going to try and keep things going so I'm going to try and do
do the show in parts so I'll record the first part
and then I'm going to go and relax for a little while you know chill out maybe a cup of tea
or three some biscuits
relax you know all that sort of stuff and then I'll come and record another part
and then start the process all over again where I'm going to go and
chill out, cup of tea, cup of coffee, a bit of food, relax you know
and then come and record another part should it need it
and then we carry on going just like that
so I'm aiming for between 45 minutes and an hour long
hopefully, hopefully that's quite good
fingers crossed please bear with me because it could take a bit of time for
me to figure out and learn how to do all of this
I know it's probably been about six weeks or so I'll be honest it's been about six weeks
but I'm trying to figure it out as I've always said I am not a professional at this
at all so that's where we're going with the show
itself and I must admit I'm very proud and very excited with seeing how it's going
for those of you watching on video rather than listening in
you'll see I'm sat here I've got a Christmas jumper on
I've got a Christmas hat on in the background is a little Christmas tree
that I've got in the studio and some Christmas lights
just trying to make it look pretty and it is nice out here I must admit
when I'm sat here I've put the light off and it's still quite bright
I'm going to be fair it's still quite bright it's nice because of the lights
so I'm going to start the day let's discuss Christmas
start with the fun stuff it's the best way forward I believe
tomorrow I've got family coming over really can't wait looking forward to it
we've done the Christmas shopping got the food in
the presents are all done and I'm going to be honest
like I've said it's Christmas Eve and I've still done no wrapping
I've wrapped up no presents I need to so far
talk about lastminute.com but you know I'm trying
once I've had dinner and relaxed a bit I think I'll get the wrapping paper out
and I'll have a go thankfully I've not got massive amounts of stuff
to actually wrap up thankfully but yeah I mean the thought of getting
family over and just having a nice relax together
I like the idea I'm a bit of a fan and again
it's Christmas Santa
talking of Santa last night me and Lisa we sat and watched
my personal favourite Christmas film of all time
Santa Claus the movie just can't help it it's such an incredible
film and the real good thing was they actually had it
online in UHD
wow it was brilliant
the colours the lighting all sorts it was fantastic I mean the film was like
I think it was 1984 it was released I was born in 83 so I was like a year
it might have been 85 it came out so I was maybe one or two years old when it
came out
but watching it now where it's been all sort of revamped and whatever else in the UHD
it was amazing absolutely amazing and there was one point
one of the poor reindeer bless him
he shed a little tear you can actually see the tear rolling down his face
it was he was a bit sweet actually
I'm gonna be honest I just wanted to go and stroke the reindeer and feed him a carrot
and you know make him feel better
come on come on Mike sort yourself out boy it's TV you don't need none of that stuff
anyway
we'll discuss that another time
but yeah I must admit
I'm really hoping you all have a great Christmas and I'm gonna be fair
and this is me getting a little bit serious
I wanna wish you all a very good Christmas
I hope you have a fantastic time because
I'm gonna be honest without this podcast and without everyone listening in
things aren't necessarily
as easy
you all do a lot more for me than I think you actually realize just by
listening in
so genuinely thank you
because you you've all helped this year
massively so I really do appreciate it
I hope you have a fantastic Christmas and I am gonna try and release another
podcast before new year
because I'd like to do a bit of a recap
on my year
as well as wishing everyone happy new year
but anyway that's really the end of
me sort of introducing the show today and whatever else
like I say there's a few bits I'm gonna talk about one of the main
sections of the show is I'm gonna do an update on how things have been
because
things haven't been particularly great I'm gonna be honest
I've gotta say that
I'm carrying on and I'm pushing
on top of that I'm gonna talk about what I'm doing to stay positive
and there's quite a bit of that
I'm gonna be fair there's quite a big chunk
to that that section of the show so
please bear with me as I say
this is a new way of me recording things this is a new way of me doing this
it has always been me just sat down
chatting away and in one hit
25 minutes half an hour job done so
let's start
today where I'm gonna start
explaining how things have been and just giving a bit of an update on myself
so
as an update on myself I think the best place to start really
is gonna be starting from the fact that probably
a good few weeks ago now I took quite a big decision
the painkillers that I was on
actually I was getting a bit concerned about how they were making me feel
it was very much a case of
I've got memory issues anyway short term memory issues
that MS is causing but the painkillers I was on
I'll be honest with you it was making me at times feel like I actually wasn't even
in the room I wasn't in my own head so to speak I wasn't
my thoughts weren't correct nothing seemed
seemed right if that makes any sense
so I made a big decision I spoke to my
my GP and he confirmed that
the painkillers I was on can cause the
exacerbated short term memory issues so I came off them
I just woke up one morning and said I'm done
I came off them I stopped taking those painkillers
and it's not been easy
I'm gonna be totally fair it really really hasn't been easy at all
if I'm honest there's been times where
the pain has been particularly bad
that I have to put out there straight away
and I would never encourage anyone else to do what I've done
by way of just coming off your painkillers but
if you have the same sort of thought processes I had
and you speak to a medical professional
it is an option and as I say for myself
it was probably the only option available to me
because honestly it really was worrying me
how my memory was going
and how I would be sat on the sofa and the amount of times I would turn around to Lisa
I'd be sat there and say I don't actually feel like I'm here
I don't feel like I'm in the room which
it wasn't a nice feeling it wasn't a comfortable feeling
so there is bits and pieces I've done to try and
try and combat the pain because I'm gonna be fair
the pain naturally is quite bad at times since coming off those
those tablets but I'm coping
I'm coping now I think since the weather has turned so much
I seem to have been getting a bit worse with
pains aches all sorts of stuff I'm gonna be honest with you
now I think the biggest one
is it's been my legs without a doubt my legs have been feeling very
very weak at times to the point where
actually standing up is not particularly easy it's not overly
comfortable
so I'm having to find new ways and different ways of
combating that the biggest one
is just finding something to lean on I'll be totally honest with you
and I know that might sound quite simple but yeah literally just finding
something to lean on
instead of leaving myself in a position where I'm in
the middle of a room and my legs go a bit weak and I fall over
so yeah I mean there's that I mean my foot drop's been
actually that feels like it's been getting quite a bit worse
with me FES machine the functional
electrical stimulation machine it's been quite difficult
because at times and I think it probably is where things have been getting a
little bit worse
it's been quite hard
to get that to actually do what it was previously doing
now I mean since having that it was brilliant it
really worked for me I was in a position where
I was I was able to move around comfortably and whatever else I would
put it
between 30 and sometimes 45
it goes up to 100
at the moment from time to time I'm actually having to put it on a hundred
and even then the foot drop's not quite going away it's
carrying on so even with
the FES machine at the moment from time to time not all the time from time to time
things are a little bit tough
but again I'm finding a way through it I'm finding other ways around it
now even if that is adjusting
how I hold my body when I'm walking or whatever else
there's little bits and pieces that I'm being able to do
just to try and combat the issues that are arising
I've been getting quite a few of the water drop feelings on
on top of my head which again is
is very uncomfortable very disconcerting you're sat in the middle of a room
sat on the sofa and you can feel water dripping on your head and you're thinking
hang on a minute I'm not outside here that doesn't make any sense
but it's happening
you put your hand on your head and
there's no liquid there there's no water
so again it is one of those things that
it's been getting a little bit more prevalent
it's been showing itself a little bit more but
again I'm kind of finding a way
a way through it when it happens I'm accepting what it is I'm realizing what
it is straight away and sort of thinking to myself
okay it's happening it's gonna go away soon it's not gonna stay there forever
it's
it's gonna be there and back there and back which again
I can cope with you know what I mean it's not a pain that one it's just a
really disconcerting feeling so again it's one of those that's
it's manageable my back
my lower back I'm gonna be totally fair is absolutely awful at the minute
it's very very painful
and to the point at times it's twinging
and it's kinda doubling my legs over you know it doesn't happen all the time
but it is happening from time to time and when it does it is really really bad
I'm gonna be honest it makes it quite difficult actually to even stand up
where I'm saying about hanging on to a wall or whatever else
when the back goes twinge even a wall don't tend to be
I do a particularly good job I mean it was only the other night
and I'll tell a little story it was only the other night that
I was on the stairs and
that's a bit random
bear with me a second okay
and I'm back yeah that was a little bit strange I'm gonna be totally honest
I'm sat here and
my shed door randomly opened on its own there was nobody outside
the door literally just opened itself and blew open
yeah very very odd very odd
that is confusing
it really is but anyway back to the story
so I was on the stairs and I'm
not really doing much so I'm just stood on the stairs having a conversation
and I kind of I thought I need to sit down
because I didn't feel right and I didn't want to fall down so I did
I did sit down now sitting down for some reason I couldn't quite
regulate where I was going
and I banged my head and I actually banged my head
on our chrome handrail
it kind of hurt I'm gonna be honest it was a little bit painful
so I sort of sat there for a few minutes got my bearings back
and I stood up to start going down the stairs
and as I stood up again my legs went a bit wobbly
and they went
and I'm on the stairs and I had no option what I had to do
is I had to kind of twist my body
otherwise I would have fallen down the stairs so I managed to do it so that
actually I fell upstairs rather than down
which again
trying to be sensible trying not to fall downwards because
ouch and I did hurt myself a little bit falling up I'm gonna be fair
again it came down to the fact that back not right
I couldn't quite get my bearings and yeah it just wasn't
something wasn't quite right so thankfully no injuries
that's a bit of a bonus there was no injuries
and it was yeah it was odd
very odd not quite as odd as the shed door opening on its own
don't get me wrong it's mega mega windy out there it really is but
the door was shut
I mean maybe it's the ghost of Christmas past
bringing me something in I'm
I mean if it wanted to bring me a cup of coffee right about now I'd high five the ghost of
Christmas past not a problem shake his hand and
share a coffee with him not a problem I'll cope with that
no worries but yeah I mean
sort of coming away again from from the sort of issues I'm having
with regards to the MS hug
at the moment I'm gonna be fair the hug is really really bad
it is absolutely awful I'm gonna be honest
because because I'm not on the painkillers
and I'm assuming it's that plus the change in the weather
it really does seem to have caused an issue where
that is actually being very squeezy and it is
I've said it before in a poem that I wrote a very long time ago now
whereby I was saying that I've had better hugs
from chucking drunks out of the pub when I was a doorman
all them years ago and it's very true
it's not a nice cuddle it really is not a nice hug at all
it's crushing me and it feels at times like I've got
like a boa constrictor around me rib cage and it really is
gripping and squeezing and I'm thinking to myself
it doesn't hurt but is not comfortable
and I'm not being able to breathe as deeply as I would like to
so again I'm just having to try and readjust and figure out
different ways of breathing and whatever else to make sure that
I'm managing to cover everything
and I know it might not sound a lot
but all of those sort of things amalgamated into one
are very very
yeah it's very disconcerting
the pain when it is there is believe me is absolutely awful
but I'm just learning new ways of coping with it all
because like I said right from the start
I don't intend giving in to this thing
I really really don't
now it causes me issues on a daily basis every minute of every single day
not a problem you know I cope with it
I find ways through it it's not comfortable it's not nice I don't like it
I'm carrying on being me that's the biggest thing for me
is through it all I want to be me
now I hope it does come across when I'm doing these podcasts
and I know it's been a while like I said it's been a while since I've recorded an episode
but I hope it comes across that I am actually quite a fun person I'm the kind of person that
is happy and the kind of person that's
proud of being me because like I say
through it all that's all I want I just want to be me
I think that's what we all want
I'm going to be honest I think that's what we all want and at times it's not easy to be that
person as long as you're trying as long as you're putting the effort in as long as you're
you're fighting
the best that you can possibly fight what more can you
can you ask of yourself not a lot let's be honest
not a lot so in terms of
of the pain type stuff the issues the problems MS is causing
that's kind of where we are with it and
believe me it could be worse I'm certain of that
it could be worse could be a whole lot better but it could be worse
so I'm kind of in a way I'm kind of pleased
because
I am still able to get out and like I say
I bought a new mobility scooter because my old one
just it wasn't doing the job anymore it really was
it was finished so on that new scooter
I'm able to go a bit quicker on it 8 mile an hour you know I'm able to
to get out and be a bit more confident in that respect
I'm still able to to be out house and be a
an individual when I need to be
you know I love the fact my family is there for me all the time
they really are and that's a fact and I am so so so grateful to
every single member of my family I'll be honest with you that's something that I
have to make clear
because I am really lucky I am genuinely very lucky
because no matter what the situation is
my family are there they're always there
and they're always capable of picking me up when I'm not
quite having such a good day and I'm gonna be honest with you mentally
at times recently I have struggled and things haven't always been perfect
but again
I'm continuing I'm carrying on and I'm fighting on through
and
again if it wasn't for my family I think things will be a lot tougher
that's a fact it's a cold hard fact it would be a lot tougher
so to them
that are listening thank you genuinely thank you
you're appreciated more than you will ever realize
again coming away from the
the the negative type stuff because let's be fair
and we've got to be honest not everything with MS is positive
it's just a fact
but I like to try and make things positive
so coming into the next part of the show
I am gonna talk about the things I've been doing
to stay positive let's get into that
positivity now positivity
really is is my way of fighting back
it's my way of showing MS
yeah you know what you've got your day you're doing what you want to do
but you know what my friend this is my life
this is my life and I'm gonna live it my way so
talking about the things that I'm doing to to stay positive
I think we've got to start and
I'm not going to go into the family side of stuff because as I've just explained
my family really are the most important part of that in terms of the positivity
aspect they really are
so let's do it from a different direction
now I know I've mentioned on my previous podcast
that I'd been offered a job
I'm actually working
okay it's only as a
a columnist for MS News Today
and it's that I say only for me personally that's such a big thing
it's something I'm so proud of
to say the very least
it's a it's I'm trying to think of the right words and this is one of the issues I'm
having recently
is short-term memory and remembering everything I want to say
so actually you're kind of seeing this and hearing this firsthand
and on that that's a good thing that is a good thing
but I'm effectively
the word I'm looking for freelance I'm working freelance
so one column a week and I'm getting to
to reach a really huge worldwide audience
to talk about things I want to talk about
and like I say the level of pride
I've got for doing that is unreal
it is genuinely genuinely unreal
you know it's not always easy and I'm gonna be fair to sit
and I'll sit in my studio out here and
record I do my bits and pieces for social media and whatever else
but I sit here on my laptop and tap away
and write stories effectively
whether that be I've written an article about how
I coped and got rid of my fear
of MRI scanners that's what I'm really proud of
because I'm hoping somewhere down the line someone could read what I've said
and even if they change what I've done just a little bit to help them
that for me would be fantastic that's exactly
the reason I'm doing what I'm doing
because somebody else gets a benefit out of it
exactly what I'm after so I've done that I've written
a couple of stories in terms of
I wrote one about how my year has been it's been my first full year
full calendar year since diagnosis you know I was diagnosed
in August of last year
so this is my first full calendar year so I've written a bit of a
a year update to explain
sort of things I've done sort of things I'm proud of and whatever else
and that was great I think it went down quite well
and you know and even going forward and I don't want to say too much because I'll
be honest with you I direct you to
msnewstoday.com or multiplesclerosisnews
today dot com read my articles
read the articles that they've got on there because there is so much on there
that is helpful
the resources on there is fantastic it really is
there's bits on there that I've read and I'm thinking I didn't know that
that is helpful I've learnt something
it's all in the right place so if you want to read my columns
that's where they are go across and have a little look let me know what you think
and again look at everything that's on there because it's a brilliant site
it really is
but there's that and again I'm gonna say I'm gonna say it again and again and again
and again and again
it's something I'm so proud of genuinely so proud of
somebody that's had 20 years in the security industry
had to retire this year because of MS
and found a way
of talking to
other people with the condition other people
that are helping others
that have either newly diagnosed or been diagnosed for
many many years just being able to
to give advice and get given advice like that
unbelievable genuinely unbelievable and I'm gonna be fair
in terms of employment type
I can't go out to work I can't
go and get a normal 9 to 5 job I can't do anything like that
I'm retired now from security that's done and you know retirement's confirmed from that
but
I'm really enjoying what journalism
type work I really am sitting
and and just writing articles or whatever columns however you want to put it
and then seeing them posted
for the world to read and like I say I'm gonna say again this is a worldwide
audience
massive audience and some comments have come off the back of
the articles I've written
huge huge smile on my face
really do it makes me feel like sometimes it takes me hours
to write an article I'm gonna be honest there's been a few that I've written in
half hour 45 minutes sometimes it takes
a long long time it's worth it genuinely genuinely worth it
because making me feel like I'm
I'm still a useful
helpful person and it's putting a smile on my face
and it's making me think I've still got lots to give
lots to give you know I'm not I'm not
I'm not sitting and doing nothing
I'm fighting I'm finding new ways
of doing that and honestly it's the
best feeling in the world it really is
in terms of work type stuff it's the best
work feeling in the world when I look
on it's normally a Wednesday an article will get published and I look on a Wednesday and go
I wrote that I wrote that
people are gonna read that somebody might like it
somebody might find it helpful I might make somebody smile with that
it is just
an incredible feeling it really is
and again that
is positivity it really is
it for me personally it's something that makes me sit and go
yes
yes it's an achievement it's something I've done
weekly basis I can look at it and say I'm proud of that
I've done that against what
MS wants I've done that
like I say it makes me proud very very proud
and again to anyone listening that may have read my articles and may have
commented on them or whatever else thank you thank you he's
massively appreciated and I just hope I'm doing everyone justice
I really really do because like I say I'm still learning with that like
this podcasting stuff I'm still learning you know
you don't do what I've done for 20 years
alone you know doing that sort of work
alone and
kinda just be a drop into this world
so give me a bit of credit
but no in all fairness again
there's that the other side of it I'm
having such good time going on to certain
social medias and talking to people
not just other MS warriors
I love that believe me that is something that
I find absolutely unbelievable and I've learned so so much
by doing that I've learned more from social media about this condition
than I have from medical professionals that's just a fact
it's not me dissing anyone that's not me
putting anyone down that is just me being completely honest
I have learned more from other MS warriors
on certain social medias the medical professionals have told me
and again it's something I massively appreciate but going on
and I'm not going to mention names or anything like that
but there was a message sent to Lisa
just yesterday from somebody that follows us
both on a social media and the person
made it clear that when I go on and do a live video
it brightens their day
it puts a smile on their face and even if I just do it once a week
it makes their week now
that is powerful that is genuinely powerful
because it makes my day to go online and just talk
to people to try and bring about knowledge
of MS it's something that
I am grateful to have the opportunity to be able to do is something I'm proud to do
but to know that what I've done
has touched someone
that much that they're
grateful and they are happy
by just having a conversation
it's unbelievable it really is unbelievable
when that message was explained to me I'm going to be honest
I tried to hide it but I actually did get a little bit choked up
I couldn't help it I did feel a little bit choked up
because that's kind of what I want I want people
to listen to the stories and listen to
to people explaining about MS
so that knowledge is grown
knowledge is built that's what all of this is
about for me is building that knowledge for people
whether that is somebody newly diagnosed somebody that's not diagnosed
somebody's been diagnosed for many many years
somebody's got no knowledge of MS at all and no connection to it
I want that to be built I want that knowledge to grow
so actually again that is something so positive
so positive you know it's
it's something that that makes me sit and go
it's all worth it it is genuinely genuinely all worth it
and as I've just explained there the social media aspect
it just it works it really does work and it's something I'm proud of
and I am grateful to those that
that I follow that actually
that no more because there's a lot of people that know a whole lot more than I do
believe me I am
very much still a novice with it that's just a fact
it is and that's why I try and avoid
medical explanations for things because I don't want to give
anyone incorrect information I want to be able to give people information that
I know is fact so to do that I need to talk about me
because that's the only thing that I can be a hundred percent
certain is fact is what I tell you about me
now again I'm going to talk the gaming aspect
because again it's something I'm really enjoying massively enjoying
posting up gaming content again on certain
sites and getting some good feedback
and doing something that I'm
I'm enjoying it you know I mean I'm actually enjoying it I'll sit
and I'll play games you know the main one I play Fortnite
not the only one it's the main one I'm not brilliant at it
don't get me wrong I am and under no circumstances am I a fantastic at that
game
nope not chance but I enjoy it
now one of the hashtags I use for it is play for fun because
again it's a game games are there to be fun
not everything needs to be competitive fun
enjoyment that is the way
forward for me and again I mean
there was one video I put up had over 10,000 views and I'm thinking
that doesn't happen very often cut the thousand
tops normally but it made me think again
I've done something that somebody's enjoyed
it was worth it
so yes absolutely there is so many things
genuinely genuinely so many things that I'm getting on with
that are positive and
I really hope that's coming across to everyone because
as I've just talked about the negative stuff
I want you to see there is also the positives there as well
not everything needs to be negative as much as
MS tries it ain't gonna succeed with that and it ain't gonna
succeed with that with me like I say not every day is perfect
and not every day am I able to put a smile on my face
but most of them I will and I will do so
because this is my life this is my body
it is not MS's body it's here as a passenger
that's a fact it's a passenger that I don't want it's a passenger I don't like and it's a passenger I don't need
but it's one I've got anyway
so it's time it starts learning it's my life
not it's but anyway
back to the positivity side of stuff going out on my mobility scooter
going out with family whether that be nipping to the coffee shop
having a coffee whether that be nipping to a shop or whatever and just having a look
round and seeing what's going on
that is the sort of stuff I'm doing I enjoy I really
do love to do and that's what's going to continue
you know if it ain't raining and I'm able to jump on my scooter and just go
pootling round town or through the parks or whatever perfect
absolutely perfect
if I enjoy it I'm gonna do it because why not
but yeah as I say that is where things are at the moment
in terms of what I'm doing to stay positive I'm gonna finish the show today
like I say I'm not actually being mindful
anymore of the time frames but I don't want to go too in depth at this point
because this is a much longer show
so I hope this new format has worked for everyone I hope this is fun
and like I say I'm a bit nervous
but either way this is where I'm going with it
because I want to get this out there I want this to get
enjoyed by people so
the last thing for me to say today
Merry Christmas I hope you all have an absolutely fantastic Christmas
genuinely whatever you're doing over the holiday season
enjoy it enjoy it as best you can
I hope you have a fantastic one appreciate you listening
and we will talk again really really soon
have a good one holidays bye bye