Hello, welcome to episode 17. I would just like to start today by welcoming a lot of
new listeners. I'll go into a bit more detail on that later in the show, but each and every
one of you, nice to speak to you again this week my friends, very much pleased to be here
talking to you. On the show today, a few bits and pieces for me to go over. I've had some
good news, for me personally it's good news from my MS team, the MS coordinator called
me in the week, so I'll explain that in a bit more detail. I've also been invited onto
a medical study, yeah me, a medical study, okay, I'll explain. I've also, during the
course of the week, I've had the occupational health get in touch with me, that's through
work, so yeah, something to look forward to. Also, I'm going to explain the issues that
I had, predominantly Friday night, but they're still sort of going on a little bit now, but
again, we'll get to that and I'll explain exactly what the story is. We'll start today
with me saying, the phone call I had from the MS coordinator the other day, put a massive
smile on my face. As I've mentioned previously, on previous shows, I've been waiting for a
lumbar puncture, which the MS MDT team wanted to do, just to confirm exactly what the story
is and at what level my MS is at. Let's say the MS has been diagnosed now for a good few
months, but the one thing they hadn't done was the lumbar puncture. It had been diagnosed
off the back of MRI scans and my physical presentations of how things are going. So,
as I say, the MS MDT team wanted to have the lumbar puncture done before I went onto any
kind of treatment, just to confirm it. The date for that is the 20th of December. To
say I'm a bit nervous is a huge understatement because I am absolutely pooping myself over
it, but actually in the grand scheme, I am really excited and I know that probably sounds
quite daft, but actually I'm excited for one reason and one reason only. Let them cross
their T's and dot their I's. Let's get me on some treatment. I know the treatment they're
looking at is never going to cure what I've got. I mean, that's cold hard fact. I've come
to terms with that. I've got no issue with that, but hopefully it can slow the decline
a bit because the decline is actually coming quite thick and fast recently. I've mentioned
that on previous shows, but I really would like to arrest the slide a little bit, try
and get a bit of time. Even if I'm just staying as I am, it's not nice, it's not comfortable,
but I'd rather that than keep sliding down this slippery slope that I seem to be going
on. So yeah, hopefully we'll get that lumbar puncture done on the 20th. They see what they
want to see and fingers crossed I can really start pushing towards some form of treatment.
I know I still got to have a chest X-ray and blood taken before I can go on any kind of
treatment. That's fine. One job at a time is get the lumbar puncture done and then let's
get them done nice and quick so I can try and push towards this treatment because genuinely
it's becoming very difficult. But here's what it is, I don't intend to dwell on the negative.
I am a very positive person and yeah okay I have days where I'm really struggling, but
you know what, in the grand scheme of things, the gloves are on and I'm fighting. Simple
as that, I'm fighting because I've said it previously and I'm going to say it again,
I've got MS, MS does not have me. I've got a life to lead, I've got a family to be with
and that's what I'm going to do. Going on to point two for today's show, I had a phone
call from my MS coordinator, it was actually during the phone call for the lumbar puncture
and I've been asked if I wouldn't mind joining a medical study through a university into
how MS affects the memory because I must admit I'm having some quite bad issues memory wise
at the moment. I mean quite honestly at times I can have a conversation two minutes later
I haven't got a clue what's been discussed. It's not all the time, it's only happening
now and then but it's not nice and I'll be honest with you it's getting me down. Again,
I want to be completely honest with you all, it's getting me down. The memory aspect of
it is really starting to frustrate me but it is what it is, I've just got to get used
to it. But yeah I've been invited on to this medical study and in front of me I've got
the email that they've sent me and it states on there, I'm not going to explain what the
university is because to be honest with you I don't know what I'm supposed to talk about
and what I'm not. Again I'm still really new to all this stuff so please please bear with
me. But it says here, many people with MS, 70% have problems with thinking skills such
as problem solving, attention and memory. Yep I'm definitely one of those people. These
problems cause distress and disability, distress absolutely. There is need for treatments to
address them, I totally agree with that. There's been a new brain training treatment developed
to try and help people with MS and basically the aim of this study is to try and assess
whether actually it's going to benefit people like us with MS to go through this treatment
and see if it's going to actually help us with our memories. As I say from my point
of view, whatever I can do to help others, I'm actually quite prepared to do. I've always
been the kind of person that's sort of, do you know what I'm not getting involved, blah
blah blah. You know what, my thought process has changed drastically on all that sort of
thing. Actually I'm here to help. I'm doing this podcast purely and simply, two reasons,
two reasons. One, it helps me to get this stuff off my head, out of my brain and out
into the world because again talking about things actually is the way forward, it's the
only way to try and help yourself, I'm not going to use the word heal because we're never
going to heal, but to try and help yourself come to terms with things and just not have
so much negativity in your own head because again there can be a lot of that, let's be
honest. So yeah, I mean I've taken on this study, I've got a phone call coming up with
them in the week, it's a video call where we just sort of go over everything and they
confirm 100% that I'm right for the study and fingers crossed I am because again I'm
here to help, whatever it takes. So again I'm really quite looking forward to that because
if that happens, yeah I'm keen, I'm on board, let's do it. Give me a second, I'm just going
to have a little sip of my cup of tea because it is a bit chilly out here in what I'm now
dubbing my studio. As I've explained previously, all it actually is is our brick shed, but
it works, it works, I'm using it as my studio. In terms of the phone call I've had for occupational
health from work, they've been in touch and in the week we are going to have a proper
phone call, I've got one of their medical assessors calling me up and they want to have
a conversation with me to try and figure out if there's anything they can do to help me
while I'm at work predominantly, just to see if there's any adaptions or anything else
that can be done. I have to be honest, I don't think there's going to be anything, I really
really don't. I go to work and again I'm not going to explain exactly what I do for
a job, but I can spend time sat down, there's always emails and things to do and again I
can just sit and help the best I can while I'm keeping myself safe and secure. So we'll
see, I mean it may well be, it is occupational health, they know what they're talking about,
they know what they're doing, so it might well be that actually they can think of things
that I can't, it wouldn't be difficult. So yeah I'm looking forward to that, phone
calls are going to be very very soon and we'll go from there. I've got to explain what happened
Friday night because that wasn't very nice. Got in bed. Now again coming back to the memory
aspect of things, I could not remember for the life of me if I had taken my pain medication
and trouble is I'm the type of person if I'm in doubt I'm not going to take it. It really
is that simple, I'm not going to take any risks with it. I've never been one, apart
from Ibuprofen or Paracetamol I've never had to take any painkillers or anything like that
previous. So I am a bit nervous, I'll be totally honest here, but I'd forgotten to take them,
didn't want to take the risk and during the course of the evening because I went to bed
really really early, I was up for work at quarter past four the following morning,
so again early night try and get some sleep. I started getting some really horrible pains,
they were like electric shock type pains in my legs, my arms and the back. I had these sort of
tickly type feelings on my head which was very very strange. It genuinely at times felt like
somebody was just I don't know rubbing cobwebs or something across my head, in my calf muscles,
both legs my calf muscles. These electric shock feelings was just horrible, I couldn't get
comfortable with nothing, it was absolutely yeah I can't really explain it to be honest
with you apart from the fact it hurt a lot and I've got to be honest it made me quite scared
I was afraid of what was going on. So taking advice from Lisa, I rang 111 to try and get some
medical advice because again not afraid to use the word I was scared, it was really worrying me
because I've had those feelings previously but actually not for quite a few years and at that
point obviously I didn't have a clue what was going on I just sort of tried to fight through it
so yeah I rang 111 to try and take some medical advice. Unfortunately 111 was incredibly busy
on Friday night so after being on hold for quite a while and my thought process of
it's not long till I've got to be up for work I mean by the time I'd phoned 111 it was about
10pm and I'm thinking I've got to be up at quarter past four I can't let work down so I did nothing
more than hung up because I couldn't keep staying on the phone in the hope of talking to someone when
it's the sort of thing chances are I'm gonna have to start getting used to so I did no more
I kept myself laying down and I really thought to try and get some sleep because
sleep's one thing on and off I struggle with and having work I've got to try and get some sleep
so I did and thankfully with Lisa's help I did manage to get some sleep that night which was
nice and I will say the electric shock type feelings are still there certainly in my legs
calf muscles and thighs predominantly but they're not as bad as the other ones and I'm not sure
if I'm going to be able to get any sleep in my legs because obviously I'm back on my
tablets now so I'm hoping that might start easing off soon
sorry just having another swig of my tea but yeah I mean it was it was not nice not nice
coming away from the not nice I have to say it um it was two days this week Wednesday and Thursday
I had massive spikes in my downloads of this podcast and I can't be honest with you I was
buzzing absolutely bouncing off the walls I was so excited so happy the level of pride
that it was giving me to know that actually people are downloading and listening to the sort of
things I'm saying because what I want this show to do I want people to see that yeah this is
absolutely horrific this condition is evil but not just MS I mean at the end of the day anything
that you've got that's not good I want people to see that talking about it just just talk about
talking about it just just talk about it don't be afraid to get what you're thinking out in the world
because actually when it's out there hopefully it takes just that tiny little load off your own mind
and yeah I gotta say it I literally in two days I got two weeks worth of downloads
that's massive and don't get me wrong in the grand scheme my numbers are tiny they they really are
they're very very small but you know what the level of pride to seeing that was unbelievable
so I've got to say it to every single person out there that's downloading and listening to this
podcast I've said this a million times but I really do mean it thank you each and every one of you
thank you to my new friends that are downloading welcome it's an absolute pleasure to be talking
to you and I really hope I'm going to be talking to you for a long time going forward and just
remember that you know what I'm here I'm quite a happy person yeah I'm going through an absolutely
rubbish time like we all are but I'm happy I'll try and keep you entertained and yeah by all means
come over and join me on my social medias I'm on Instagram and I am on TikTok it's the same handle
as I've got for the show it's Mike's underscore ms underscore journey come over come and say hello
drop me a message because I do try the best I can to try and message people back and have conversations
there's one more thing I've really got to talk about I've been
mega excited since it happened coming home from work on Friday sat on Eleanor my mobility scooter
and coming across a road I bumped into Santa Claus and Mrs Claus absolutely brilliant it was
chap and his wife dressed up as Santa and Mrs Claus pulling this tiny little sleigh
full of presents for kids and they were literally just walking the streets of my town
and seeing kids giving them just little presents it was brilliant absolutely fantastic I have to
say it I did take a selfie with them and that's on my Instagram but yeah no honestly it was
fantastic and I did I had a bit of a chat with them for a little while and I said to them
and I said to them actually just how grateful I am and they asked if obviously I've got kids
and I explained yes and they actually gave me a teddy to bring home for the kids
that was lovely and the teddy was gorgeous honestly it genuinely was absolutely fantastic
so yeah I have to say made my day really did made made my day so yeah I just had to put that one
out there so we can finish on a finish on a high thank you all once again I'll never stop saying
those words because genuinely I am incredibly grateful to each and every one of you for
downloading and listening I very much looking forward to talking to you in a week's time
have the best possible week you can speak soon bye bye