Hello and welcome back to my next podcast. Today I'm going to talk a little bit more
about the book clip I got when I did my first round of Okraverse. I was going to do a second
podcast this week, or the week just gone, but I've been a little bit busy. There's
been a couple of quite big life changes for me to talk about, one of which I'm going
to say is absolutely massive. So yeah, I'm going to talk about that. Before I do anything
else, let me just sort of get back on with the book that I received, because I'll be
honest with you, I think it's worth talking about. There's a saying, it says here, it
talks about the treatment itself, and it sort of goes through support and everything, which
I'll be honest with you, I think it's well worth having a conversation about, because
if anyone out there is maybe waiting for Okraverse treatment, it might be worth just having a
bit of a listen and getting some ideas. Because I know when with me, in the build up to it,
I have to admit I was actually quite nervous, that's an understatement, I was incredibly
nervous I'll be honest. But at the same time, I had other people explaining how Okraverse
works, how it works for them and whatever else. And I'll be honest with you, it helped
quite a lot. It did sort of calm the nerves ever so slightly. And you know, I'm a couple
of months on since that treatment. And up to this point, perfectly fine, perfectly fine
in terms of what the treatment itself does. It's not caused me any major issues at this
point. But again, we don't know going forward. But I'm actually very confident, I am very
confident and again, I've not really had any new issues since since the treatment. It's
all old stuff. I've said this a few times, it's all old stuff. Yeah, it's old stuff at
times that is actually getting worse. Kind of expect that with a progressive condition.
It was always going to happen. But again, it's one of those. So again, I mean, it's
sort of explaining things here about if you're on other disease modifying treatments, DMTs,
you would need to stop that, obviously, to start another one. You certainly would not
want to be combining two. But again, it's telling you things about having blood tests
and whatever else. Again, with me, they gave me quite a few blood tests, I was checking
for all sorts of things, even down to do I have the antibodies to deal with chickenpox.
Thankfully, I do. But again, I mean, that's the sort of thing that surprised me. It's
like chickenpox. I had that when I was a kid. But I can understand why. Because again, when
they're putting this stuff in your system, it's attacking those cells that really would
attack those kind of conditions. So in all fairness, they're going to need to know what's
there, what's not there and everything else. So that's understandable blood tests. Yeah,
I fully understand that. Pregnancy test. Clearly, I didn't have a pregnancy test. I mean, it
don't get me wrong, I'm putting on a little bit of weight these days, but I didn't need
a pregnancy test. And again, the things like not taking blood pressure medications 12 hours
before actually sitting to take ocrevus and talking to your medical team. Should that
be an issue? With anything like that, always talk to your medical teams. No matter what.
Talk to your medical teams. They're the ones that can give you all of the advice that you're
going to need. Talking about having live vaccines when you're taking ocrevus. Again, talk to
your medical teams about that. They will explain to you what you can, what you can't and everything
else. Because again, everyone is going to react differently. So your medical team should hopefully
know what's best for you. So again, yes, not to breastfeed while you're on ocrevus. A bit
of a more serious one. Don't start ocrevus if you currently have cancer. Again, ocrevus
is attacking your immune system. Your immune system is going to be needed to do whatever
it can to try and fight that kind of condition. So that is quite a serious one. Not one we
can joke about and play around with. That's very, very serious. Talking to your doctor
if you've ever had hepatitis B or are a carrier for hep B, hopefully the blood tests they
give you should show that up if it's in your system. So again, talk to your medical team.
I'm going to say that a lot. Talk to your medical team because your medical team will
be able to point you in the right direction. I'm literally just giving you what I've got
in front of me in this book. And I have to admit this little booklet was quite helpful.
And I have sort of had a bit of a flick through it since the last podcast when I was going
through it really for the first time. So yeah, I mean, I have had a bit of a look through.
Talking about the day before your infusion, if you've got any kind of sign of infection,
if you've got fevers, chills, anything like that, get in touch with your teams because
they might have to put your, your infusion back because again, ocrevas is there and it's
going to lower your immune system. If you've already got a cold, cough, anything like that,
anything at all, you might just have to put it back. It would be worth it in the long
run. Just even if it's just for a couple of weeks, talk to your team, get it put back
because you don't want to put something that's going to attack your immune system into your
system while you're already not well. I know that sounds really, really silly and it's
something that pretty much everyone's going to know, but I've got to put that one out
there purely and simply because yeah, that actually makes so much sense. It's unreal.
It really, really does. Another thing they've got here, I'm not even going to bother reading
this bit. With ocrevas, you have your first two half bags, you have them 15 days apart
and then what they do six months after that, they'll get you in for your next full bag.
So you have your two halves close together and that's just really to get your body used
to what's going on because again, ocrelizumab, ocrevas, it's quite a serious, serious medication.
So it's, it's well worth them. So just checking that your body's going to cope with it before
anything else. So don't be surprised by that every six months after that. I think we can
cope with that if it's going to mean that actually we should be in a better position
to try and not to have too many worsening symptoms. You're always going to have some.
Let's be fair, this isn't a cure. Ocrevas is not a cure. It's not going to make everything
go away. Hopefully it's just going to slow the roll a little bit and make things a bit
more comfortable. Probably the best word I can think of right now. Make things a little
bit comfortable in the intervening time. For your infusion day, make sure you've got something
to pass the time. Yes, absolutely yes. Whether it be a book, laptop, your mobile phone, whatever,
snacks, drink, take something with you. Please take something with you because honestly it
does take a while. It's not done in ten minutes. Take something with you, pass the time because
quite honestly you're going to need to. So yes please, please do that. It might sound
really really daft but yes it is quite a big one. Again as it's saying here, it's talking
about pre-medication. So they're going to put a steroid into your system. That is something
that quite honestly is very much necessary. Sticking that steroid through you. Again just
to try and help your body a little bit. Also antihistamine. Antihistamine again is just
going to try and help your body. Any kind of reactions that you might have, antihistamine
is there to try and fight it off a little bit and make it less of an issue. So again
on the day they will go through your system before ocrevus does. And I know it might sound
a little bit, wow this is quite scary and it is. I'll be honest it is quite scary but
at the same time actually if it's going to help slow things down it is in my personal
opinion it's worth trying. It really is worth trying because you just, you don't know.
If you don't have the treatment again some people don't and that's perfectly fine as
a personal choice. But for me I had to give it a go and I will continue to give it a go
to try and give me a way of fighting back a little bit more medically. It's all well
and good me fighting back in a personal sense and I'm always going to do that but just that
little something in my system to try and help that is perfectly fine and for me yes. Talking
about infusion related after effects which is something that to be honest with you and
as it says here 24 hours after infusion is something you've got to look out for and any
kind of reaction itching, throat irritation, shortness of breath, flushing. Flushing is
something after the second one I actually had a little bit of. Around the old face I
was a little bit red but nothing major, nothing major, low blood pressure. I've actually got
a blood pressure cuff at home so I can check my blood pressure but if you think you've
got an issue with that please go and get seen. It doesn't matter whether you go to a chemist,
whether you go to your doctors, whether you go to A&E, any kind of medical specialist
get your blood pressure checked if you're concerned. It's worth doing, better safe than
sorry. Fever, feeling tired. I actually again it's something I did suffer with especially
after the second one I was falling asleep on the sofa quite a bit. Headaches, feeling
dizzy, feeling sick and a fast heartbeat. Any of that sort of stuff make a phone call.
Get yourself checked. Better safe than sorry. I'm saying that a lot today aren't I? But
it is absolutely something that's erm, again this is all new, it's all new to you, it's
all new to me. If you're not sure speak to those that know. That's exactly where I'm
going with it, it's exactly what I'm going to do because you just don't know. What I
am going to say at this point, I'm probably going to sort of give the book a bit of a
rest because there's still quite a bit more of it I'm going to be honest with you. It's
talking about things like more support. Again, whatever country you're in, a little Google
search and you're very likely to find someone somewhere, some kind of charity somewhere
that's hopefully going to be able to give you help and advice. It's well worth it for
me and I'm going to be honest, I use the MS Society. They're incredible, absolutely
superb, they really are. I can't thank them enough for all the help they've given me over
the last year. And to be fair they don't even really know just how much help they've given
me but it's huge, absolutely huge. And their website is www.mssociety.org.uk. As I say
that's just the one that I personally use, you've got the MS Trust, www.mstrust.org.uk
and shift.ms which is www.shift.ms. Again, sort of things, sort of people that can offer
help. It's always worth getting the help if you can, let's be totally honest, it really
really is. Now I'm going to kind of knock that on the head for a little bit now. I've
had quite a big week, I've had quite a big week. Life changing, the MS diagnosis life
changing enough because of the MS diagnosis and because of how things have gone with my
mobility and let me make this clear right now, my mobility is not great. I struggle
with foot drop on my right hand side quite a lot, more than quite a lot, it's constant.
I do struggle walking around much of a distance or whatever else but I'm capable of doing
it should I need to. Now on that note, over the last couple of months there's been meetings
with my work and I'm not going to go massively into detail here with the kind of meetings
but they're quite important and it's very much come to light that we've made an agreement
for me to leave the company. Now I've been with them for the 4th of May would be 8 years
with my current company. The agreement has been made after me talking to legal professionals
as well as work. It's time for me to step away. Now my line of business I've been in
the security industry for 20 years. It's a long time, a very very long time and I believe
personally I could continue for quite some time. I do think there would come a time eventually
where I would have to say okay, you know, here we go. But I'm capable of doing what
I was doing to an extent. I've been a manager of the site that I'm on with another manager
working the opposite shifts. Again I've got to say I think I've continued for a while
yet. But the time has come, I'm officially waiting for the paperwork but a couple of
days ago was the last time I would put on my work uniform. It wasn't easy, I'll be
honest with you, it wasn't easy but at the same time you've got to do things at times
that you don't want to do. This is one of those things for me I didn't want to do. Again
I genuinely believe I've got a lot more to offer. I can do emails, I can do scheduling,
CCTV monitoring, literally there are so many different things that I could still do. But
sometimes you've got to accept and when legal professionals are saying to you it's probably
the right thing to do. There we go. So as it stands at the moment, I'm for want of a
better term, I'm on gardening leave but it's just a formality at this point waiting for
the paperwork to come through and then that would be me done. 20 years in security, done,
done, boom, poof. No more getting up at quarter past four in the morning to go to work four
days a week for 12 hours a day. That ship has sailed. Time for me to start looking for
something else and for me to start a new chapter and part of that new chapter is going to be
these podcasts, really trying to ramp things up a little bit. My social media accounts
again ramping things up a little bit, really trying to push this different way of life
because that's kind of where we are now. I'm at a point where it's a different way of life.
One door closes, well I'll kick through the next one and that's what I'm going to do.
On a lighter note, I had a physio appointment and I know I've mentioned it, I was being
fitted up for a fez machine, functional electrical stimulation. Wow, absolutely wow, there's
not a lot more I can say, it was incredible. As I said, I've been walking for a long time
with quite a severe foot drop on the right hand side, my toes drag across the floor,
I can't lift my foot properly to walk anything like that. They put this fez machine on me
and don't get me wrong, it's not going to cure things like the fatigue I suffer when
I walk or anything like that. I'm not expecting it to but what it is doing is it's raising
my foot so I could walk properly. For the first time in a very very very long time I
was able to walk properly. I could walk, I was still using my crutches, that's fine,
not bothered about that. I was walking without the fear of falling over. I was walking, actually
stood upright. I've not done that in a while, I've hunched over and walked for a very long
time because I'm trying to adjust myself to the point I'm not going to fall over and I'm
trying to get used to walking with the foot drop. I didn't need to do that, this machine
was on me and I didn't need to do that, it was absolutely superb. I don't know what more
I can say about it. The referral has been put in for me to go and get one that I can
bring home and use in my daily life. Honestly I can't explain how it made me feel to actually
use that machine and be able to walk properly. The day after I suffered, wow honestly I was
in agony because I pushed myself that hard. I don't care. I'll take that because being
able to walk properly means actually I wasn't falling over, I wasn't risking falling over,
I was being able to walk more comfortably, stood upright. Just wow. Just wow. The two
physios I had with me, absolutely incredible. Absolutely different class. It was to the
point and I'm going to be totally straight with you. I got emotional. Walking properly
like that for the first time in such a long time, I got really emotional and yeah there
was more than one tear shed because genuinely I didn't think that would ever happen again.
I never ever thought I would walk like that again. So yeah honestly I can't explain to
you just how it made me feel. It was a whole different level of superb. There is not really
a lot more I can say about it apart from wow, wow, wow, wow. It's going to take a few months
I think to get me on. That's fine. The sooner the better. But that's fine. I'll accept that.
However long it takes it takes because actually it's worth the wait. Very much worth the wait.
So yeah I mean that's how my week's been. As I say it's been a bit of a life changer.
The fact that I don't get up for work in the morning anymore, it's going to take some getting
used to and yes I am looking for work. It's not me done in the workplace but it's me done
in that type of workplace. 20 years in the same industry. Yes it's long. It's very very
long. But there's other things out there that I can do and I'm going to do. Let's just see
where the time takes us on that one. I'll keep you up to date don't panic. I'll keep
you up to date. So yeah massively life changing week. I'm going to be honest. Losing, effectively
losing my job. I haven't been dismissed or anything like that. It's a mutual agreement.
One that I probably wouldn't have agreed to if I didn't need to. But I've agreed to it.
And this fez machine. Again that could change my life. I'm going to be honest that could
change the way I get about. It could hopefully make things a little bit easier when it comes
to walking. Wow. Absolutely wow. I can't say anything more than that. That machine is just
different class. But yeah I think that's probably where we're going to leave it for today. As
I say I wanted to get the conversation out there about the book I received from the Okra
River Street one. Because again from my point of view I was really nervous. So if I can
try and help some others out there I want to. I want to. And I wanted to get the conversation
out there. The cat's out of the bag now with regards to work. And yeah that's where we
are in terms of my fez machine. In time. That's coming. And I can't wait. I genuinely can't
wait. Well thank you very much for listening. I know we're looking at another 25 minute
podcast this one. But do you know what it was worth it. Very worth it and I hope it's
worth it for you to listen to. Have a great few days. I am going to be talking to you
again soon. Because I've got nothing but time on my hands. Speak soon. Bye bye.