Hello and welcome to another My MS Journey podcast. This week I think there's
only really one place to start I'm gonna be honest with you and that's we've got
to talk about. It's March which means it's MS Awareness Month. Now MS Awareness
Month actually is only in the United States. I know that came as a shock to me
I'm gonna be totally honest it really came as a shock to me because I actually
thought it was a bit of a kind of a worldwide thing to an extent so when I
spoke to the MS Society and asked the question because I actually wrote a
column on MS News today about MS Awareness Month and the MS Society
said to me actually it isn't in the United Kingdom and I'm thinking to
myself do you know what what a wasted opportunity genuinely a wasted
opportunity because let's be totally honest if we came together as a planet
I'm gonna be straight as a planet and actually had the Awareness Month as a
full world thing do you know what actually it's probably a better and more
compact way of doing things because as it stands we have MS Awareness Month in
the United States through March we have in April in the United Kingdom we have
MS Awareness Week and then in May we have World MS Day it just doesn't make
sense does it in the space of March April May there's all these different
different events for MS now I think that's crazy I'm gonna be honest I really
really do and I'll explain why because when you think about the fact that we're
we're trying to get the knowledge and condition out to people trying to make
people with MS realize that one you're not on your own there's other people
out there that are going through all of the things that MS gives you and let's
be totally honest as we were all very well know no two people are the same
there's a reason MS is nicknamed the snowflake disease and it's not because
we're snowflakes we're just not it is because same as snowflakes no two are the
same and that is just the way is I'm afraid it's just the fact no two of us
are the same we all go through things differently we all feel things
differently and again we'll think differently we're human beings kind of
the joy of being a human being I'm gonna be honest but anyway that's a conversation
for another week but yeah the fact of the matter is for me personally I think
streamlining it into one just just one time that we can sit and discuss and get
the word out about MS I think that's more beneficial than mixing it all up
having it all different and at different times now even if we was to streamline
it from a month to say two weeks but we do it as a as a world as a community
all come together and we all spread the word at the same time just makes more
sense just makes more sense now what I will say and I'm going to be totally
honest for me and this is the next thing I want to talk about is what MS
awareness month actually means to me because actually to me it's incredibly
important and as I say I'm in I'm in England so technically I'm not supposed
to have anything to do with MS awareness month no no we're not playing that game
I'm having everything I'm possibly to do with it I'm gonna do and I'll do the
same during awareness week and I'll do MS awareness day world MS awareness day
in May because anytime we can talk about the condition it's a really good thing
because let's be fair you know I'm not gonna go into exact numbers but not far
over two million people worldwide is the number they they believe is diagnosed
with multiple sclerosis now you're talking millions of billions sorry
billions of people on the planet so it's such a small percentage it really is it's
such a small percentage that you've got to ask yourself what can we do to help
other people who don't have much to do with anyone with MS what could we help
them do to understand now there is a few things I'm gonna be honest there is a
few things now firstly and I think probably the biggest one is just we
talk openly about the condition again I'm not a doctor and I will never give
medical advice I will never try and explain things in medical terms and
whatever else but if we if we just talk about how the condition affects each of
us individually without prejudice without anyone saying to us oh you
shouldn't be saying this or you shouldn't be saying that no no we say
what we want to say and what we need to say to get the word out and let people
know how it feels to live with the condition now I think the biggest thing
in that is the more of us that do it the more it's going to leak over into into
the mainstream and that's where it becomes really positive it genuinely
that point becomes very positive because when people are hearing us talking
openly it makes everyone realize that we aren't just a medical condition you know
it's a chronic illness it doesn't go away there is no there's no cure for MS
anyone that tells you to take a parasite cleanse just just yeah just tell them
where to go because it just it's not true there is no such thing as a parasite
cleanse to cure MS and it's one I do hear quite a bit I'm going to be honest
with you and I feel embarrassed for those that say it but again it's one of
them that we can talk openly about and if we feel confident enough to discuss
that then that's a real good thing is it's a real good thing because again
then those people that are making those sort of comments are going to learn and
understand actually I sound like a bit of an idiot by saying it I just
shouldn't say oh the parasites inside you once you clear them you'll be cured
no no I'm I'm genuinely genuinely won't and the other thing is when we're
talking openly and somebody says the likes of oh I knew blah blah down the
road he had MS and he's cured now he's perfectly fine if he had MS he wouldn't
be cured he just wouldn't or he'd be a very very rich person that's just a fact
it should be very very rich because chances are they know somebody with
relapse in remitting MS and at the current time they're in remission and
not having and not suffering any obvious effects doesn't mean the non-obvious
stuff isn't around because a guarantee is but again the more we talk the more
we get people to understand this sort of stuff and again that then becomes
really really positive because it's it's a strange old thing it is a strange old
thing having that kind of thought process of I'm gonna talk openly about
my medical condition because let's be fair a lot of times you don't want to
you know you think to yourself is it the right thing to do it is it really is
it's the only way we build knowledge and again it's MS awareness month this is
the time for us to have those conversations this is the time for us to
to be as open as we can about the condition and let people understand what
we go through and how we deal with it because again I think what there needs
to also be is the the side of things where okay when things are bad everyone
needs to know but actually when we're doing well I need to know that too
because again at a later date when somebody else gets diagnosed they need
to understand that there is two different sides to life you've got MS
and you've got the life you want to lead and again that's a big thing by by us
being open in that manner people can understand both sides of life because
again I'm gonna be totally honest it ain't all sunshine and roses having MS
it really isn't it's evil it's an evil evil medical condition that's just a
fact don't matter what you say that's nailed on but if you want to live a good
life happy life with the condition you can you really really can because okay
you've got to make some changes to how you live your life the way you do things
and whatever else but you can do that and once you've done that you find a way
to carry on and you find a way to to live alongside and live the way that you
want to live so again this all comes down to the fact the more we talk and
the more open we are the better because again that way it brings more people
into play everyone starts to understand the condition give me a second I'm just
gonna have some of my water that is the chair creaking I promise
got a glass of water sitting around
that's the thing we're coming on and talking a lot you've got to have a drink
and now me blanket on the back of my chairs decided to fall maybe all right
not a problem he's okay but yeah I mean that's that's the sort of thing in terms
of talking and being open about MS and the way it looks out it looks at us and
the way it treats us and the way we can treat ourselves but the other thing for
me about switching things up and doing a more targeted worldwide approach in one
hit it doesn't stretch things out too far because what we don't want to do and
I'm gonna be totally honest what we really don't want to do is when we're
talking and we're being open about condition and whatever else if it goes
on too long people are gonna get sick and tired of hearing it and you don't
blame them the hot everyone's the same in that respect you've got to get sick
and tired of hearing it because what we don't want to do is bore people to death
you just don't because if we do that then nobody's gonna care and they're
gonna get frustrated and they're gonna say to us be quiet we don't want to hear
it so in all truth there's the the element of trying to condense things
down into one bite-sized time to get everything out and that's where it's
down to us as a community in my opinion to to find the way to find the right way
to to get things out get things in the open but not have it to rot in your face
everything's right there and it's eating away at people because again
there's ways of doing this stuff and I'm just a normal everyday fella I'm as
simple as that you know I'm not trained in in media I sit here and do this
podcast I do my social medias all that sort of stuff but I'm not trained in
media so again others that that know more about that side of life might be
about say to me actually you know this might work that might work I'm open to
it because again I'm still learning I know this podcast well over a year old
now I've been going a long time but there's always way always ways to learn
there's always things I can learn now and again by doing things in a bite-sized
chunk like that with it being more targeted maybe we can get things out in
the mainstream media a bit more
because again you get things out in the mainstream media and we get I don't know
get medical professionals involved the best people are warriors like ourselves
you know when you've got MS warriors themselves that are talking about the
condition that's the best way to do it because in all truth nobody knows better
than those are going through it a textbook is amazing it's a fantastic
thing life experience is the one that's the way it is I'm afraid I will always
believe that no matter what the situation life experience is always
always going to be the the best now coming away from that side of it a
little bit and thinking about again with regards to an awareness month like is
going on
having it advertised more now again I'm not in the United States so I can't say
what what if any ad advertising is going on but having it advertised and again
trying to bring people in from overseas to talk about the condition again it
kind of it forces the openness and from my point of view you know when we next
month when we have MS awareness week I really hope to see orange everywhere
don't care don't you know I'm not bothered about where I'm seeing it as
long as I'm seeing the color orange and I'm hearing people talk about it and I
want to turn the news on and I want to see people being interviewed because
again that's how to get the knowledge out and I love nothing more than going
on and doing doing my lives on social media and whatever else and having new
people come in ask questions even if they're not got any kind of connection
to multiple sclerosis anywhere come in and ask questions sensible questions
because that way actually we can look at things and think people are learning
people want to learn and if people want to learn we go in the right way we're
pushing in the right direction and again there's different ways of doing this
stuff now for me it was a big thing I'll be honest with it was a real big thing
me wanting to come on and do this this episode where I'm talking about MS
awareness month
but as I say I've also written that column that is on MS news today it's
available on their website by all means go and have a read because I've had some
real positive feedback off of it I'm gonna be honest some of the comments
I've had have been lovely really really nice and again I have no journalism
experience so I'm kind of learning as I'm going I'm doing it I'm getting there
slowly very very slowly now in terms of multiple sclerosis itself and I'm gonna
do a very very basic overview of what the condition actually is and I do mean
it's basic and that's for anyone that is listening in that wants to just learn a
little bit now I've already made clear there is no cure and that's just a fact
there is treatment all the treatment is there to do is to try and slow
progression a bit that's all it's gonna do it's not gonna it's not gonna cure
you you're not all of a sudden gonna wake up one morning and go oh I haven't
got MS anymore it just isn't gonna happen but if it can slow the roll and
keep you going on a more positive footing so to speak it's worthwhile I
mean myself I'm on okravis okra lose a map which is once every six months I go
and have an infusion and I'll be honest with you it kind of to me personally
I've had the two first half bags and the second full bag so this would be the
start of year two in about two or three weeks I've got my next next treatment
now I'm ready for it I know I'm ready for it my body feels like it's it's
ready to go it needs a bit more juice in there to try and help it along a little
bit but again that that is what that is but multiple sclerosis itself as I say
chronic medical condition and the real real bones of it the real the real
basics is it's where your central nervous system gets attacked by your
immune system and your immune system it strips away the myelin which is like a
it's like a fatty sheath around your nerves and it strips it away in places leaving
scars or lesions whichever way you want to put it I must admit for me I use the
term lesions and most people do now with regards to to that what what you've
basically got then is the signals are not getting sent around your body
properly so if you strip off the coating on a wire and you're left with just the
actual wires themselves electricity is going off in weird and wonderful places
it's just not going to work and again you strip away that myelin sheath off of
your nerves things don't get sent around your body in the correct manner and the
cold hard factor that is it then leaves you in a position where disability
movement just about everything I mean it affects your brain it can affect your
optic nerves literally all of that sort of stuff it's a condition that is
genuinely evil because as I say one you can't get cured
and two with regards to to MS it is for some a hidden disability for myself I'm
sat here now and I don't look like there's anything wrong with me I'm looking
at my camera I'm waving to my camera hello to those on on social media and
whatever else but in all truth when I stand up and start walking you can tell
the disability is there now on my belt right now and you know what for those
that are actually watching I am gonna show you what I've got here because this
little thing my FES machine functional electrical stimulation box now what that
does it connects to two little electrodes on my leg which are sticky
they come off at night and I put them back on of a morning thankfully this
little box what it does it makes it safer for me to walk because again for
me personally it's not necessarily a hidden disability when I'm stood up
because I stand and I walk without that little box and my toes drag on the
floor it's called foot drop now with them dragging on the floor you're looking
at trips falls all of that sort of stuff that can occur but that little box right
there that I'm showing to the camera now that little box helps me walk a bit
safer now can't walk any further I cannot walk any further I can't walk any
faster but it's safer when I am up on the feet it's not quite so so dangerous
for me to be so you know I can I can wander a little bit around and whatever
else from nipping to the shop or whatever yeah I can do that it's okay
jump on a mobility school get off outside the shop all round so again for
some it's a hidden disability for others it isn't comes back to what I was saying
earlier in the show about everyone being different because we are that's that's
just the way of things now I'm not going to go too much further into it I think
I mean I've spent almost 25 minutes talking about MS awareness month and
whatever else and that very brief overview of what MS does what it is now
there is a summit also I'm going to talk about this is quite quite important it's
quite quite a big thing something I'm looking forward to and I'm also going to
make mention to the MRI scan I had a couple of weeks ago let me just wet my
whistle a little bit
probably should have made myself a coffee would have made more sense
wouldn't it anyway so let's start with the MRI because I'm gonna be honest I
found I actually genuinely failed you know I've taught myself in the past
little tricks and tips to not be afraid of the MRI scanner and the night before
my scan I actually had a panic attack I didn't make no sense and I was making
myself worse by saying to myself you're being really silly you've you've got
over this fear you don't need to carry on thinking about it
but I did and the next morning come around and I woke up got myself sorted
jump to the mobility scooter went down to the hospital and even when I'm on my
scooter I'm listening to a bit of music and I'm thinking to myself I've got this
you know I'm actually quite looking forward to it and it wasn't until I
walked into the scanner room we even got the cannula in ready for them to
do the contrast dye wasn't till I walked into the room and I totally and utterly
froze I couldn't believe it now I will say the members of staff that were in
there they was brilliant with me you know what I was absolutely fantastic
they were so respectful very very helpful and they they did all they could
to keep me calm actually no matter what I was trying I couldn't keep calm
because I was angry with myself so the scan did fail I have got
another one booked that's coming on Saturday this this coming Saturday and
you know what I'm chomping at the bit for this because I failed it once I am
not doing it again I am not doing it again I need the scan for my treatment
I'm having the scan this time and I will not allow myself to go through what I
went through last time because again it just it made no sense it really didn't
it was so confusing for myself because I'm thinking you've you've beat this
fear and even to the point I did everything I normally do and I felt fine
but it was just the thought of laying on the bed and getting into the scanner I
just couldn't couldn't go through with it and whatever else I mean I did get on
the bed and they put the cage over my head and whatever else to do the brain
scan no no fear just just and you know what it might not have even been fear I
don't know what it was it was just it made no sense
it genuinely it made no sense at all but you know here's what it is it's one of
those things I'm over it I'm past it and I will not allow it to happen again we
all live and learn don't we we all live and learn but on top of that something
quite important has happened now I I'm 40 years old I've 41 this year I've
never passed my driving test I've passed the theory test a couple of times in the
past I think it's three times actually but I've never passed the practical and
since having the issues with my legs and whatever else and MS coming into my life
I've been a bit a bit concerned about that learning to drive and getting
behind a wheel but after having conversations with the DVLA and the
doctors I've been given the all clear I've been told I can learn to drive
absolute worst case I can drive an adapted car whereby the pedals aren't on
the floor they get put on steering wheel and that way I can sort of do stop go
all that sort of stuff by hand and it's not then a it's not it takes the feet
out of play now I only want to drive automatic anyway so it's only my right
foot that needs to do any work at all the left foot can just have a snooze and
forget it exists for the time I'm in the car but I have already booked my theory
test and I'm really looking forward to it that's also Saturday yeah I've got my
theory test on Saturday I think is about midday and then at 430 I believe it is
it's MRI scan so I hope I really really hope come Friday night I can be a little
bit excited one passing the theory test and two getting through the scan because
again the thought of having the freedom of
kind of grab a coffee you know if there's nothing going on and just jump in
the car from I'm on me own with nothing going on jumping a car nip up and go and
grab a coffee go shopping take Lisa out take my dad out you know he's for years
and years bless him taking it taking us around take my brother out take the kids
out take everyone out I'm not fussed just whatever I can jump in the car and
say right let's let's go somewhere let's go and do something that to me is
something that that really does quite excite me the thought of being able to
do that is pretty awesome so yeah I'm quite excited I'm gonna be honest now
I'm not putting massive pressure on myself to pass my theory first time I
really want to really really really want to and I'm gonna do everything in my
power to do so but if I don't it's not the end of the world because I will come
back and try again because you know what literally just a couple of weeks ago
that I'm thinking to myself I probably never will drive and it's something that
I want to do I really really really want to be I do I want to have that that kind
of freedom because again I mean it's at some point in the near future we are
looking at moving house we're looking at going to a whole new area but I want to
be able to do that and explore the area I'm about jumping the car because again
mobility scooters great I absolutely love my mobility scooter I really do
Shelby amazing brilliant bit of kit but can only take me so far whereas a car
can take me as far as it wants while it's got fuel in it it can take me where
I want to go so fingers crossed fingers crossed Saturday could hopefully be a
very very big day it really really could
are we gonna be honest I think the next thing I really want to talk about is
the way I've been recently and I'm gonna be quite open I am actually gonna be
quite open because a lot of people around me have noticed that I've been a
bit a bit down and a bit negative recently and actually I don't quite know
why because right now I'm gonna be totally honest I feel so bubbly it's
unreal I genuinely genuinely do so I don't quite know why it's one of them
that I'm wondering if it's a throwback again to the the fact that for so many
years of my life I've been out been working been doing stuff and now I'm
not easy that my brain is sort of fighting back a little bit saying
actually you should be doing this or you should be doing that when in all facts
I'm busier now than I've ever been before really really am I am so much
busier now than I've ever been before and actually I feel happier for it I
really do I feel a lot happier for it I'm a lot more positive about things to
come I'm a lot more positive about where I'm heading and yeah I'll be honest
with you I'm hoping I've turned a bit of a corner I'm hoping I've turned a bit of
a corner because let's be totally straight you know I've got this podcast
that I do I love doing I genuinely have all of the things I do recording this
podcast is it's still my number one he's genuinely still my number one because
again I do get so many positive comments off it and it's helped other
people I know it has I've been told so and again it helps me because talking
about your issues it's the right way to do it not letting them just sit and sort
of festering your head and whatever else it's the right way forward it's
definitely the right way forward and this this is the way I like to get things
out it's a bit easier now coming away from that a little bit I'm going to
explain something that happened yesterday because I was out here in my
studio and I took a bit of a fall probably my fault above all else I got
two carpets I had two carpets on the floor I knew the carpet on the top had
bunched up my chair got stuck so I tried to ram my chair back so I could get up
to go indoors and chair got cold I fell and I broke my laptop screen actually
broke my laptop screen when I fell I hit my head as well but that's cheaper to
fix you know my head's alright just teasing just teasing but no I did I
broke my laptop screen so today I've had a new monitor turn up so I've just got
to sort of learn now to use the laptop as a keyboard and use the other the other
screen the bigger screen as the monitor which is kind of cool because I'm sat
here now and I've got my camera up on me me gaming monitor and I've got the other
the other monitor sat there where I'm watching myself chatting away and
whatever else and actually you know what it's it's making me feel a bit more
confident and a bit more comfortable with it all I'm kind of yeah I'm a bit
of a fan and it's also given me the potential and the possibility of sort of
move my chair a little bit and brought the microphone to a different part of
the room I've opened it up a little bit so you can see walls I've got an MS
shirt on me door I've got me four medals that on the door three of those are for
raising money for the MS Society and the blue one is back in 2016 my six aside
team we won our league now I'm gonna be fair for me I didn't play many games in
that because at the time I was falling over lots now I know why I was yeah I
was doing a lot of falling so I'm more managed the team than anything else but
again somewhat positive but yeah I mean that's that's the whole point so I've
had that that bit of a spill yesterday and again it's kind of opened me up
again to remember that stuff does happen it does happen I was laid on the floor
for a little while and thankfully I got support both Lisa and my dad managed to
come and get me and take me back indoors I will say I am fine let me put that out
there now I am fine I've got a little bit of redness on me on my forehead I
should stop touching it because it's a bit sort of touch but yeah other than
that I'm okay I'm okay well I'm gonna call that an end for this week do you
know what thoroughly enjoyed recording this really really have and as I say MS
awareness week if you're able jump on social media talk MS awareness week MS
aware I mean I will get my words out MS awareness month in the United States
doesn't mean we can't get the word out let's do so worldwide let's all talk
about MS let's get the world talking about this condition because it's the
only way everyone's gonna learn about it I hope you all have a really great week
I'll speak to you soon bye bye