Hello and welcome to podcast number 19 I believe we're on. So we are really, really motoring
on. It's only been what three months now I've been doing this. Yeah about that. Yeah so
yeah we're moving on quite quickly. On today's episode as you can see for those that are
joining us on YouTube I have Lisa with me. Hello. We're gonna be talking today about
my lumbar puncture that I had a few days ago and then we're gonna be coming away from the
negativity type stuff and we're gonna be talking about the panto that we went to. We do it
pretty much every year now. Yeah it's a tradition for our family. We do enjoy it, it's good
fun and I must admit the panto cast, no Lisa very, very well by this point. Yes that will
be discussed don't you worry. So to start with today as I say every single time thank
you all for listening. I massively appreciate it. We're starting to pick up quite a few
new listeners and each and every one of you is massively appreciated so thank you. This
podcast will be released on Boxing Day so I have to say I hope you have all had an absolutely
fantastic Christmas. I hope you've all eaten as much as you could possibly eat and I hope
you've been well and truly spoiled and if you haven't I hope you've just had a cracking
day because. Yeah just remembering the people that you've got around you because it's not
the amount of presence that you've got it's the people that are there with you to share
the experience of a family with. Absolutely correct, absolutely correct. You know no matter
what just hope you've had a good day doing absolutely whatever you want to do. It really
is that simple. So today I'm going to start with the lumber puncher that I had and being
quite honest. Yeah I couldn't be with you because I'm poorly. That's right Lisa unfortunately
she's not been very well bless her. She's a bit of a bit of a dodgy chest. Yeah I've
got that winter lurgy and it's turned into a really bad chest infection so yeah that's
not been good I'm on antibiotics for Christmas. You are. Good job you don't drink. Exactly.
You have a cup of tea instead. Absolutely. But yeah so obviously Lisa couldn't be with
me for the lumber puncher but in the days leading up I was getting a bit nervous. Yeah
a little bit twitchy the night before and all. Yes absolutely I was incredibly nervous.
Thankfully my dad was able to come with me. I'm going to try and keep the talk of the
lumber puncher as sort of minimal as possible because I really want today to be quite positive
and upbeat because of Christmas. It would be rude not to. So cut a long story short.
We went along to the lumber puncher and I must admit we was taken in or I was taken
in quite quickly. It was very much of a case we got there. I struggled to find where we
were supposed to go so I had to ring. I spoke to my MS coordinator on the phone. She told
me where to go and while I'm sat down I've been sat down literally a minute. Dad had
gone to go and book me in and my MS nurse come out she come and got me took me in. We
sat down we had a conversation and obviously she took the details that we needed. I signed
the consent all the basic stuff and then it came time for the actual act of the lumber
puncture itself. Yes you can tell from the laughs it was interesting. Now I've always
been quite terrified of needles. Nobody likes them but it's just you're a bit of a woman.
Very much so. It really was a case of I did all I can to make sure I didn't see the needle.
I am quite lucky because my MS nurse who performed the procedure she's actually the only one
in the county that uses what they class as the thinner needle which actually reduces
the chance of headaches apparently by 30%. You've not even got any bruising. No I'll
be honest I've been really lucky. No headache nothing and I must admit we'd gone out and
bought a load of energy drinks which anyone that knows me knows I do not drink energy
drinks. No. So I'd done all of that sort of stuff just to make sure. I've been alright
I've been very very lucky. First night though you was really oh I can't settle. You were
moaning it was hurting. It was yeah. And then you've managed to get yourself not quite comfy
but a little bit better than it was and then the next thing you was asleep. Yep absolutely.
Your dad didn't move because normally you're a right fidget so you're like a little parrot
but you literally just laid still and your dad didn't move he's like oh I can't move.
It was really uncomfortable really uncomfortable and I've got to be honest my left leg I'll
explain now why my left leg was a little bit strange. So we sat there and I'm sat up for
the lumbar puncture sort of off the edge of the bed with my feet on a chair. They've pulled
my shirt up and they went to try and put the needle in. Not a problem needle went in perfectly
fine except for the fact they touched a nerve. I've got to be totally honest they touched
this nerve and I have never felt anything like it in my life. There was this pain it
was like a really odd electric shocky type hot pain shot down my left thigh right the
way down into my toes. I screamed. Yeah your dad heard didn't he? Yep my dad was in the
waiting room and he heard this scream and I've got to be honest I couldn't even try
and recreate it if I tried. There was a few swear words. Yeah there was a good few. We
won't say them but yeah there was quite a few swear words and your dad said it was religiously
that's what he could hear. Yes absolutely I mean I swore over and over and over again
at least four times maybe more and I must admit I was so embarrassed. My reaction was
unreal as they just screamed like that. I made the MS nurse jump. I made the MS coordinator
in the room jump. I felt so bad I felt so guilty for it because they were just trying
to help me. I just couldn't I couldn't stop myself. I'll say that feeling that went through
my leg was unbelievable and I've tried to explain it to you since haven't I? No matter
what I try and explain it doesn't do it justice. It genuinely doesn't do it justice at all.
But yeah I mean that night yeah at least I tell you I was unable to move purely and simply
because I was scared to move but yeah a couple of days after I was very uncomfortable actually
on that leg and my back. Yeah about 48 hours were now. You're still a little bit wobbly.
Even now I'll be honest with you I'm still not perfect but I'm getting there. Yeah you've
been back to work today. Yes. But I've not really seen you much because you've been at
work but what I've seen at Iron you're still wobbly but not as much as what you had been
just before you obviously you went back to work. Yeah absolutely so hopefully fingers
crossed we might be getting somewhere fingers crossed yeah but yeah I mean that's where
we are I've been told I've got an eight week wait and then hopefully it's on the road to
finding out if we can actually get you some treatment. Oh yes please. Because that's the
one thing that seems to be holding up quite a lot of people at the minute isn't it is
treatment. Yes it is it is most definitely and I've got to say it I'm gonna say it I
do think it's absolutely disgusting making anybody wait the amount of time that not just
me anyone currently is having to wait for these sort of things because it's not just
the physical effects it's the mental effects. And it's not just the person it's the people
that are around them because we're seeing it all the time and we haven't got a clue
how we help we just sort of wing it but then we think are we actually making it worse and
we don't know but we're just trying to do what we can to support the person that is
actually dealing with this day to day and they don't tell you exactly how they feel
especially if they're like you but we know and it's not nice seeing you you know you
have deteriorated quite a lot and you know we've just got to learn that it's just a waiting
game again. It is and that to be honest with you that's all it seems to be these days is
a waiting game and again I'm don't get me wrong I'm not saying I'm in the worst position
than anyone else but all of us that are having to sit and wait for things actually. It's
hard for all of you. It's totally out of line I can totally understand that yeah there's
always going to be a bit of a wait it's the amount of time that you've got to wait for
this stuff it's not fair. It's not just that it's the case of you're not really getting
much communication either are you? No not unless I initiate it and that's being totally
honest unless I initiate communication it's pretty much radio silence if I'm honest and
it's not on and I'll be honest with you on that I do think and I'm going to say it the
system needs to change. It genuinely does. Yeah big time because we're not the first
people to be stuck in a bit of a hole of the unknown you know there's thousands out there
that are in the same situation that may be a little bit too worried to actually say you
know look what is going on because they might not have that you know immediate support with
them so it's just a case of I'll just have to accept it. Yep and that's kind of where
everyone is we have just got to accept it. And I know we're all in the same boat aren't
we we're all in really the same boat in the same storm or whatever but it doesn't make
it any easier for you know for you or for that person or anybody else because all you
want is just the road to a little bit of treatment so you can have a little bit of you. Yeah
yeah exactly just you know slow the roll a little bit you know slow the roll because at the moment
as Lisa says and I've got to be honest I'm falling off a cliff currently with with how things are
and yeah I'll put on a full face. Well you're hanging you're not falling because I've got you.
Grip a bit tighter but yeah no genuinely that's that's where we are.
Eight weeks fingers crossed we can start looking towards the treatment that they've already told
me they're expecting me to have so fingers crossed. Right let's get let's get a little
bit more cheerful. Panto. It was Friday. It was it was we're recording this episode this is Christmas
Eve so it is Saturday so it was last night we went yeah time this episode comes out it's
going to be Boxing Day so go on what's your take on the Panto? Oh it's amazing
I mean I may as well just be in there. Yes. As soon as they see me oh my I put them off
I don't know why I just put them off they forget the lines and then they have to make it up as
they're going along because they're like yep there she is here she is again. Genuinely it's true
it genuinely it's true trouble is Lisa and a couple of other family members were sat in
the front row and there's quite a few of us that went so we had to sort of stretch out amongst
effectively three rows yeah there was we didn't say all the rows but there was one two three
five of us at the front yep and then there was one two three four five of us at the back yeah
and then there was a three of you yeah so yeah 13 of us all in and as I say with with regards to
Lisa as soon as they come on stage they see her face and it's because of her laugh no it's not
it's because of her laugh oh no it's not oh yes it is she starts laughing and that's it
can't concentrate because honestly she sounds like a wild animal when she's laughing well it's a
mixture of all because yeah I laughed like a normal person and then Covid hit yeah I got really ill
with Covid back in 2020 and I'm a bit of I'm a bit of everything yeah quite right I can laugh
like a pig a donkey a seal you name it I can laugh like it it's so true honestly I would do it now
but I'm a bit poorly yeah one day I promise you will all hear her laugh that is a guarantee one
day we'll make sure that happens but yeah it was brilliant so it was Rapunzel we went to go and see
and I'll be honest with you it was fantastic yeah I mean so we go every year now and wouldn't miss
it for the world honestly it's just such a fun night and I've got to say there was a couple of
instances where they made little jokes and things and honestly I'm sitting there and I've almost got
tears rolling down my eyes I mean it was absolutely hilarious one of the the women bless her she
she kind of fluffed her lines a little bit yeah she made a massive uh a boo boo with it didn't
she but they had to keep rolling with it and they did it was brilliant they just sort of had each
other's back on it didn't they they were all together absolutely fantastic and one of the lads in there
they was doing these tongue twisters it was going on for about five minutes yeah a little
bit longer than that and it didn't miss a beat and it was all beginning with an s
genuinely didn't miss a beat absolutely superb and they even said that that wasn't even rehearsed
yeah because the one that was doing it he he really wanted to do it didn't he in rehearsals
yep and because it wasn't about him they're sort of like okay well we're just going to now let you
do it and he was like oh okay and he got it incredible genuinely absolutely incredible I mean
uh quite honestly the performance itself was superb it really was but the little bits and pieces
that was in there that actually was off the cuff yeah it just made it a little bit more
different they did they did I mean I don't know if I'm supposed to say the name of the the company
on here I'm gonna say anyway because they deserve a shout out polka dot pantomimes yeah absolutely
superb never ever let us down any year we've gone to go and see one of their pantomimes we always
come out ready to book the next one most definitely genuinely superb I honestly could not complement
it any higher that would be like the only thing that we would all miss really wouldn't it yeah
absolutely without a doubt genuinely I honestly I can't sit here and recommend it any higher than I
am it really is just fantastic you come out of there with a smile beaming from ear to ear
and it sort of makes our Christmas a little bit don't it they always take the time even like when
obviously one of them was still on there and they was meant to be going around the curtain they were
still having a chat with me and it's all like you need to get going but no they always take the time
they do just like talk they do I mean even to the point they like to shoot shoot water pistols
all the time brilliant me yes not saying you deserve it but you deserve it no I do not
but yeah no honestly absolutely fantastic such a good night obviously it's family time and it
I can't beat it we are very much family people you know tomorrow Christmas day
we've got family over and again we can't wait I mean there's a good chunk of us
we've got Christmas dinner to cook for a large amount we should have said
we do you mean Lisa's got yeah Lisa and dad they've got Christmas dinner to cook
they do it fantastic every year it'd be wrong for anyone else to try and get involved
oh no it'd be good because yeah that's it everyone tell him so me and his dad can have a day off there
we'll do a poll at the end of it shall we oh no I wouldn't go that far come on but no genuinely
we are family people really can't wait for Christmas and again I mean from our point of view
it's kind of what we live for the family time and it yeah it really is it's what we enjoy
it's been a bit of a stranger anyway and I don't think anyone's really feeling Christmassy
not just you know people I've spoken to but I think it's people that I haven't really spoken
to either I mean I popped into one of the shops today and even their sent they don't feel it
and obviously I'm missing my mum and dad a lot more this year obviously it is it is hard
yeah yeah most definitely yeah it really is from our point of view as a family and I have to be
honest it's actually probably been one of the worst possible years for me I'm 39 years old
for me personally and I'm not just talking the MS we're talking there's been other bits and pieces
going on it's probably the worst year of my life I've been honest it really is a bit of a turbulent
year it has yeah so looking forward to getting the next two weeks out the way we can start our new
year quite right absolutely and a fresh start and let's start looking forward to what next year
brings yeah definitely hopefully it's better than this year we can't get much worse
we sure oh there she goes oh I told you nearly heard it oh oh no good she's calm
no that's a shame I don't have an asthma attack no please don't right okay I think that will do it
for today again I genuinely hope you've all had a fantastic Christmas yeah from our family to your
family Merry Christmas a bone and a dollar a bone and yes that's Merry Christmas and a happy new
game in Italian have a great Christmas bye speak soon bye bye you