Hello and welcome back. I hope everyone is doing okay. I hope you all had a brilliant Christmas and a fantastic New Year.
We're back with another show today, first one of the New Year.
I think there's only actually one place to start, if I'm totally honest.
I've got to start with the news that came out a couple of weeks ago.
It was a news article by the BBC and I'm going to make comments on it.
I've got my phone with me so I've got so many information here because let's be fair, I want to get it correct.
I don't want to miss bits and pieces out.
So the first thing I want to do is the news about how scientists believe they've figured out how the MS, multiple sclerosis gene, first spread.
Now the first thing I want to do is I want to give absolutely massive and full credit to where this information has come from.
As I say, the news article came from the BBC.
But the work itself has all been done and it's been done by a concoction of three different universities.
And the universities are Cambridge, Copenhagen and Oxford.
They've spent ten years, ten years putting together this information, which I think is huge, absolutely huge.
And before I go into what it is they're saying and everything else, what I would like to do is just make a comment on what I think this information could possibly lead to.
Because what it shows for me is actually MS is being investigated and it's being investigated at quite high levels.
You know, there's people at some very, very, very big universities looking into the condition.
Now that is only a positive thing. Let's be totally honest, that is only a positive thing.
You know, if people are prepared to look into the condition at some point you never know what it's going to lead to.
Maybe one day, maybe just one day, we won't have to consider MS anymore.
You know, if they can find this information you just never know what the future holds. Let's be totally honest, you just never know what the future holds.
So what I'm going to do a little bit is not read from the article but I'm going to cherry pick bits of information that are on it.
And what I would say here is a word that they've used in terms of the actual information is a quantum leap.
Now for me personally, and I've got to be totally honest, I think that's going a bit far.
Do I think that it's an incredible bit of information to find? Yeah, absolutely. It really, really is.
And it says here that they've unearthed teeth and bones from ancient times that they've tested and whatever else.
Done the bits and pieces. Now the genetic testing they've done is fantastic. You've figured out the start.
Where MS began. How. To an extent, it's began.
Now, what I wouldn't say is using a term like quantum leap is correct.
Because for me that means you're jumping way far into the future to figure something out.
That for me isn't what this is. This is a good start.
Now, what they're saying is they discovered genes which entered into northwestern Europe around 5000 years ago.
Now again, in the grand scheme of things, 5000 years actually isn't that old. Let's be totally honest, it's not that old when you think of the age of the planet.
But what it is doing is showing that it started somewhere.
And what they're saying is it started with cattle at herders that were called Yamnaya. I hope I'm pronouncing that correctly.
And it was in and around western Russia, Ukraine and Kazakhstan.
And as those people moved around Europe and whatever other places, that's what then moved the condition.
Now, again, that's really positive. That's an incredible thing to find out. It's an unbelievable thing to figure out.
But what it doesn't give us, it doesn't give us what the future may look like for MS.
Now, to come up with what they've come up with, it's taken 10 years. That's a long, long time.
So, as long as now what they've found out, they've figured out where MS has started, incredible.
Now, if you've figured out where it started, use that to start pushing forward and start figuring out how to fight it.
Because the treatment we've got for MS now, it's all only there to try and slow progression of the condition.
There's no cure. There's not a, this is going to make you better. You're not going to have problems with MS type treatment.
It doesn't exist. But if you can figure out where something has started, find a way to incorporate that into what the future would look like for MS.
Because again, this is incredible. And I want to put on record my absolute thanks to those that have spent years of their lives looking into the condition.
Because it needs looking into. MS needs looking into. There's plenty of other medical conditions that do too.
MS is the one that affects me. So that is the one at this point I'm really focusing on.
To publish an article like that, it does actually give me a bit of hope. It gives me a thought process that actually there may be, at some point, there may well be a way to fight the condition.
And again, I say this with the biggest respect to those that have spent many years looking into MS and figuring out where it started.
And that's no mean feat, let's be honest. It's a very difficult thing to do. Never achieved it.
But to publish an article like that, personally, I think what they should also do is start looking into other ways to find ways to fight it.
You've given us a positive and it is a huge positive. It's massive, absolutely huge this.
It's just a start. I'm not even going to say scratching the surface, it's just sort of identifying the surface and saying, OK, we know what it looks like.
The next thing you should be doing is saying to us, right, OK, off the back of this, we're doing X, Y and Z tests and we can figure out ways in which we can try battling the condition slightly better.
Because again, for myself, I'm on Ocroloosomab, Ocroavus. That's one of many treatments. Again, I state there is no cure. Currently is no cure for MS.
But use what you've learned, carry on with your findings, see what else you can find out, because I'm pretty confident off the back of what they've noticed, there's got to be more information that can come.
And telling us where it's come from is absolutely fantastic. I'm looking at a map here and it is from that area of Ukraine, Kazakhstan, Russia.
And it's worked its way into Europe and then obviously worldwide. So look worldwide now, look worldwide, see if you can find a way to find out how it actually spread.
Because the one thing we are told with MS is in terms of genetically passing it down, there is allegedly, and I use the word allegedly, a 2% chance of passing it down.
Now 2% is not zero, but it also means there's a 98% chance that you're not going to pass it down.
Now we know it's a rare condition, but it's still being passed around and going around the world. That's just a fact. That's literally just a fact.
So start researching further afield and see if we can find out when it started to go round. And if you can find out when it started to, maybe you can start marrying that together, how it started to work its way round.
And maybe you can start working out, okay, if it's worked its way round in this manner, is there a way we can try to limit that going forward?
Now I'm not a scientist. I've said this previously. I'm not a scientist under any stretch of the imagination. I am not anything to do with science.
I'm just a fellow that has MS that looks into what has been written and I've taken a bit of time to digest it.
And again, it is positive. I am so, so grateful for what has been figured out here. It's massive, absolutely huge, but more needs to come.
There needs to be other tests, involve other universities. You're all very, very clever people.
And start running tests on other, as you've, as has been said in this article, bones and teeth.
You just never know what you're going to find there. It's just, you're just never going to know. I mean, that really is about as far as I want to go in.
Because as I say, I don't want to read the entire article. That's not fair. It's a BBC article. I would strongly suggest you go onto the BBC and read it if you haven't already.
Like I say, it's a brilliant read. Honestly, it's a fantastic article written brilliantly and it gives you an idea.
On MS, you know, it just gives you a thought process of, again, where it started, how it started.
As it says here, the discovery helps take away some of the mystery of the disease. Yeah, it does.
Let's be totally honest. It really does. It takes away some of that mystery because you're not now thinking, how old is it? When did it start?
I'm going to be totally honest. I don't actually care. I really don't care. All I care about is at some point in the future, we're at a stage where MS isn't actually causing the problems it is now.
And one day, just one day, a cure, a way to say, do you know what? I had MS. I'm alright now. I've been fixed.
I took this tablet, that tablet. I did this infusion, that infusion. I'm fixed. It's gone away. That's wishful thinking. I know that.
Trust me, I understand that's wishful thinking, but at the same time, it's also a thought process that I think everyone with the condition has had at least once.
Let's get to that that way. Brilliant article. Excellent paper that's been written. Fantastic bit of work by the three universities.
Let's push forward. Let's see what else we can do. That'll be where I finish for that bit.
Okay, right. So after that very interesting take on the article from the BBC, what I want to talk about now is the issues thought wise, in my thought process, I've had since the New Year.
Because I'll be totally honest, and everyone that's followed my podcast from the start will know that I've not been posting very much lately.
Same as my social media, same as my website. Now, there is a reason for that.
One, the reason is I've been trying everything I possibly can to improve the podcast. I want to try and improve my thoughts on what I actually know about the condition.
And lastly, it's the not so good thoughts that I've had coming into a New Year, where it's the first time I've come into a New Year that I'm not working as such.
Now, I know to some, the thought process of being a 40 year old and being effectively retired would be fantastic. It's something you'd be like, oh yeah, I'd love to have that.
Can I be honest, it's the worst possible feeling going for me personally. I am a working person. I like to be earning money. I like to go out and show the family that I'm able to provide.
Believe me when I tell you there is zero pressure from my family at all. All I get is unbelievable support from every aspect of my family.
Unbelievable support. You just wouldn't understand how good the support is. But I am a very proud person. That's just a fact. I'm a very proud person.
I'm a person whereby coming into the year and I'm thinking normally about this sort of time I'm going to be looking to start booking my annual leave at work and just looking at what the year might look like.
Getting family stuff organized. Not doing that this year was actually very difficult. Very, very difficult.
Now thankfully my support network has been just, again I will say it's so, so incredible. It really is. Grateful isn't even close to explaining how good things are.
Now it doesn't stop the occasional bad thought going through my head. And I'm honest and open about it. I'll be totally fair. I'm honest and open about it.
In terms of, again, this podcast. I've struggled to sit and record episodes recently purely and simply because I'm thinking to myself as much as I want to improve, am I improving as a person?
Am I feeling as though I can help others? And I'm going to be totally honest at times the answer to that was no. I didn't feel like I was that kind of person.
Which is difficult. It's not the nicest thought process in that manner. But let's be totally honest. That's kind of what having a chronic illness does to you.
It makes you sit there and it makes you question yourself. It makes you think is there more I can do? Is there more I can try to do? Should I be doing more?
The answer to those questions is only you know. That's as it is. Only you know. Each person is individual. Each person is different. As we know with MS the condition is different for each and every person that's got it.
It's just not the same. We may have similar issues. But what we don't have is the same. We all feel things differently. Each and every person is different.
So thankfully I had a brilliant chat with Lisa. Absolutely fantastic it was. And she actually really helped me. She helped me open my eyes to see the type of things I'm doing.
The fact that actually I've got things to be really proud of. Really really proud of. And I've got things I can continue to be proud of going forward. Once again this podcast.
The social media accounts and gaming. Now I'm going to say it. The gaming aspect. As everyone has seen I've separated new episodes of my podcast onto a different YouTube channel.
So the gaming and podcast is separate. Now the gaming side of it is really taking off massively. And actually I'm really enjoying it. I'm going to be honest I am thoroughly thoroughly enjoying it.
And when you think that it would be so easy to give in to those thoughts of I'm just not good enough. I'm not doing enough. I should be doing more. Nope. Absolutely not.
If you're doing everything that you possibly can and you're at a point where you're comfortable with what you're doing. You're doing enough.
Now again everyone's different. So what I'm capable of. The things I can push myself to do. It's not the same that somebody else can do.
It doesn't matter. If I'm happy with what I'm doing and millions of other people are happy with doing what they're doing.
And you're doing the best you can. Even if that's just waking up in the morning. You're doing the right thing. Literally you're doing the right thing.
And this is just it. It's so easy. So so easy to allow the thought processes of I'm no good. I'm useless. I'm not capable of anything.
To sit there in your brain. Don't allow that. Don't allow that. As long as you wake up in the morning. You've started.
For me personally. Wake up in the morning. Make the bed. That's a start. It's basic. But it's a start. It's something.
And again it's something that is positive. Something you can look back at. And even if that's the only thing you achieved that day.
Don't matter. You've achieved something. Because it's not always easy to keep fighting through.
Now one of the things I want to talk about a little bit is symptom wise. The type of the type of issues I've been having.
Because there has been new things. Let's be totally honest. There's been new things.
But one of the biggest things that I've been dealing with. I'll be honest. I find really quite strange. Is around the top of my left foot. Near the ankle.
I get like a burning sensation. It's not even a pain. I'm not going to say it's a pain because it just isn't. But it's a burning sensation.
And I tell you what. It comes and goes and comes and goes. And genuinely it feels like somebody has got a blow torch on that section of my foot.
Slash ankle. I don't know how to think of it. I'm going to be honest. I really don't know how to think of it.
Because it actually started the evening of Christmas Day. That's the first time it had happened. I've had it every day since.
Just at different times. It's not been every minute of every day. It's on and off. But my foot can be ice cold. I mean freezing. My feet are always cold.
Which isn't nice. I mean I wear thermal socks sometimes and my feet are still cold. Anyway. It changes rapidly. That one tiny little section of my foot is then red hot.
Yeah I can't figure that one out either. I can't figure that one out at all. It's just odd. So it is one that it will have to be spoken about properly.
Because it is something new and it's something that's carried on. As far as I'm aware I was actually due for an MRI scan in December.
I've not had a call. Not had a letter. Nothing. So I am in the process of trying to chase that up. Because let's be honest. At least once a year we need to have an MRI scan.
We need to know what's going on. Is there any changes? Is there any new lesions? Have any of the lesions progressed?
So I'm chasing that. I'm going to get there. I'm getting there with it. I'll figure it out. Don't worry about that.
But things like my MS hug are very prevalent. It's a case of every day I'm living with a hug. Have been for an awfully long time. Even previous to being diagnosed.
The issue was there. That was the reason I went and got tested for whatever else. I've said it before and I will say it again to anyone new to the show.
It was what I now know is the MS hug that caused me to go and get medical testing. Because I would get in bed. I was scared. I was having an heart attack.
Because it was crushing. It was really painful and struggling to breathe all sorts. But it's never gone away.
Now I'm going to discuss very quickly painkillers. I'd been on gabapentin for 15 months. I did take a real big leap forward.
And I was having, and it's coming back to symptoms, I've got short term memory issues. I do find it very difficult to remember things.
Which is why at the start of the show I had my phone so I could read what I was talking about in terms of the report that the BBC published.
Now I was finding that those memory issues were getting a lot worse to the point of I would sit in the living room.
And I would say to Lisa sometimes, I'm sat in the living room but actually, do you know what? I didn't actually feel like I was there.
It was very very strange. And it was actually very worrying. Incredibly worrying. So I contacted the GP and the GP prescribed me a slightly lower dose.
And made it clear that gabapentin can, not for everyone. I understand that now I'm saying this. This is just what happened to me. It doesn't mean it will happen to everyone else.
It can cause short term memory issues. So for me with short term memory issues I didn't want to keep taking that risk.
So a couple of days after I woke up in the morning and said to myself I'm not taking these anymore. So I just stopped. Completely cut them out.
Which is something you're not supposed to do. I would never suggest anyone does that. But I did.
Now over time it got me to a point where I wasn't sleeping for quite some time actually. I didn't sleep. I say I didn't sleep, that's incorrect.
I would go to bed, I'd go to bed at 10 o'clock at night. I'd still be awake at 4 o'clock in the morning. And then I would drop off.
And I wouldn't wake up until 11, 12 o'clock. I didn't like it at all. I couldn't work out what was going on with it. I'll be totally honest. I just couldn't figure it out.
So again I contacted the doctors and they prescribed me with a new painkiller. I'm taking one tablet just before I go to bed. It's amitriptyline.
And so far I've been taking it now I'm going to say roughly about a week and a half. It's helping with the sleep. It really is.
Now in terms of pain and everything else I'm having to manage that a different way. Because while I'm asleep obviously it's working.
I'm only taking that one tablet just before I go to bed. So during the day things are a bit different. So again I'm learning new ways to manage how the pain is affecting me and whatever else.
Because again I'm now going to come on to the pain aspect. Now every minute of every single day I have as I've said the MS hug. My back is incredibly painful. My lower back.
To the point at times when I struggle to bend down I still fight through and still do it as best as I possibly can. But I fight through as best I can.
I get no end of pains in my legs. My legs are incredibly painful. More so just above the knee. And again it is something that is difficult.
Again I'm learning to adapt. I'm finding ways to figure this all out. Not easy but I'm doing it and I'll continue to do it.
The foot drop is getting to a point where actually it's hurting my toes now. Because as I'm dragging my toes across the floor and I don't always wear slippers in the house.
So as I'm walking my toes are rubbing on the carpet. Yes I've got socks on. I don't want to go into too much detail about that but I've got socks on.
And it does. It is sore. When you go over a door bar it can catch and yeah it's not particularly nice.
There's other bits and pieces as well. Like I've said previously in a podcast many many months ago now. About water drop feelings on the top of my head.
I can be sat in a room like I am now and all of a sudden I feel like there's water dropping on the top of my head.
Water can't be dropping on the top of my head. I'm in the house. There's no leak but it's still doing it. So again you've got that sort of thing.
There's lots of other bits and pieces as well but I don't want to bore you with all those details.
But I'm finding ways around it. I'm finding ways of figuring it out. And again it's coming in handy now.
I've got back to such a positive mindset. Start of the year my mindset was negative. I'm going to be totally honest.
I've always been positive from day one. I've come onto these podcasts. I've gone onto social media and how positive I am.
I'm going to be straight. I had a few weeks where positivity just didn't exist. I'm going to be fair. I've got to be as honest as I can.
Right now I am back in that head space. I'm back to being who I am.
CMS has had its time on that. My time now. Absolutely my time.
Now the next thing I'm going to talk about is the positive side of stuff. Let's discuss it.
Right then. Positivity. This is the bit of the show that I'm really looking forward to talking about. Positivity.
When the negative subsides and I'm going to be totally straight. Actually sometimes you need negative to be able to get fully positive.
Because life isn't always perfect. Well I'm back. I'm back in a big way. There's lots of things that I'm doing.
There's certain bits I can't talk about currently and that's fine. But eventually it will all out believe me when I say it's incredible.
But as I mentioned the gaming aspect. Now a lot of people they look at computer gaming and think oh here we go.
Just another nerd sat there spending all their time playing computer games. You know what. Yeah. But you know what. It's fun.
And it's a release. More than anything it's something you can sit and focus on. And it makes you think to yourself.
Right. OK. I've got this to achieve. I can't achieve much by getting up and doing stuff. I can achieve this.
I can play my game and get this reward on the game. I can get that reward on the game. I can have fun.
Now let's be honest. The fun aspect is exactly where you want to be with it. It really is that fun aspect.
It's the right way to look at it because again I don't play computer games to be competitive. That's not me. That's not fun.
But if you can sit and play a computer game and enjoy yourself. And again I post up quite a few short videos on YouTube.
And yeah OK you get the odd negative comment and whatever back from it. But the positive comments that come forward are brilliant.
And do you know what. When you look at the numbers going up. I mean I'm over 500 people subscribing to my channel on YouTube currently.
You look at that and you think to yourself. Well there's over 500 people that are actually enjoying what I'm doing.
There's 500 people that are taking a bit of time to appreciate something that I'm spending my time doing.
That's fantastic. Honestly it's absolutely fantastic when you sit and think that. It's just a whole different thought process.
It's a thought process that you sit and go. Wow there's people out there actually interested.
And you know while you're sat there playing the game and you do something good. And you do a clip.
And while you're editing that clip and again I do take time. I edit my stuff. So it's even more entertaining for people.
You think to yourself. It was brilliant. I really really really enjoyed that. It was fun.
I mean I'm going to name the main games I play. I don't know whether you're supposed to. I don't care.
I play Fortnite. I really enjoy it. It's one of those that you can just sit and waste a couple of hours.
Enjoying yourself. Doing what you've got to do. And yeah just forget reality a little bit.
The other one is EA Sports Football. I love football. Except VAR in the Premier League. I hate VAR in the Premier League.
I really really detest it. I'm just going to say that again. I hate VAR in the Premier League.
Just how it's used. Not the actual function of VAR itself. But anyway. That's a conversation for another day.
But yeah I mean those two games. Football is what I grew up with. I love it. Absolutely love it.
Except VAR in the Premier League. The way it's used. So I can't help myself. I've got to play that game.
And again. The thought process of just sticking a West Ham shirt on my players and try and score a couple of goals.
It's fun. It's just fun. So yeah I mean there's that. That's one of the biggest positives I've got currently.
Now another one of the biggest positives I've got. And I'm going to be totally fair. Is what I'm doing now.
Is talking to people about MS. Because again I am not an all-knowing authority on the condition at all.
I just am not. And I'm never going to be. But I know how it affects me.
And if I'm able to talk to people and give them an idea how it affects me and that can help them.
That is something that I am proud to do. Genuinely proud to do.
So yeah I mean there's that. This podcast. The social media. And I'm going to say this. I've said it a million times previous.
The social media aspect is unbelievable. And I won't name the social medias but there's one in particular.
The support you get on there is unbelievable. And I go on and I do live videos. And again I took a bit of time off them.
But you go on and do a live video. Talk to people. And it's just fantastic. Everyone is friendly.
Everyone treats you like family so to speak. And it just. You finish talking. You finish having a conversation.
And genuinely you walk away or whatever else. And you do it with a smile on your face because you've either helped someone.
Or somebody's helped you. You've just had a good natter. It's just the way forward.
So again in terms of positivity that is a massive one. Absolutely huge. Huge one.
And I'm proud to be part of that community. Now I'm sure like all of us I wish I wasn't part of that community and didn't have the condition.
But I have. So I am in that community. I'm proud of it. I'm very grateful for it.
In terms of other things I'm doing to be positive. I'm going to start getting a guitar out again because I haven't done that in quite some time.
And again I'm still only teaching myself. It's something that I enjoy doing. It feels good even if it's only a short period of time.
Play a couple of chords and whatever else and just listen to the sound it's making. It's brilliant.
Speaking of sounds. And I'm going to say this. I wasn't gonna but I'm going to say this.
There's one song at the moment. One song that I'll be honest with you. I could listen to over and over and over and over and it's not modern.
It is an absolutely fantastic track. St. Elmo's Fire. I believe it's by John Parr. I could be wrong on that. I believe it's John Parr.
What a song. The lyrics. Everything. Every part of that track is just different class.
It always. When I'm listening to it and believe me when I say I'm singing along to it very very loudly.
I make no apologies for that. But I'm singing along to it. And you take note of the lyrics and everything that's in the song.
It's just unbelievable. I can relate to it. I can totally relate to it. I thoroughly enjoy it. At the moment that is my song of choice.
Now I get a lot of songs of choice. I'm going to be totally fair. I listen to my playlist I've got set up and I think.
That's a great tune. That's a big tune. What a passive tune that is. It's fantastic.
This one currently is my big one. I could listen to that song over and over and over and over and over and over and I could keep going.
I could just listen to it non-stop because it is a fantastic track. It really really is.
And again it's the sort of thing that puts me in this positive headspace I'm in right now.
As a family we're looking at what kind of days out we can do. You know we're at the end of January now.
So for me personally it's not going to be too long till winter is behind us.
And we can start processing the thought of summer. Now I'm going to be fair. For me personally my MS symptoms have been worse in the cold.
That's just me being honest. They have. They've been a lot worse.
I know a lot of people struggle more in the warm. That's where the condition is different for everyone.
But again start pushing towards the summer. I want to start doing things like barbecues.
We love barbecues. As a family we absolutely love barbecues. Me especially. I think they're amazing.
Get out in the garden. I want to start gardening a bit more. I want to sit out in the garden.
I want to have a cup of coffee, sat out in the garden, bit of music on, sun coming down with a smile on my face.
That for me is one of my biggest, biggest positives. I love being outside. Absolutely love it.
So again, roll on spring and summer. Can't wait. Really, really, really can't wait.
Because that's my time of year. So yeah I mean that's the sort of thing positives wide.
Like I say as a family if we can get the thoughts of going out for a day, spending time together.
That's how I like my life. I love spending time with my family.
That's the biggest positive I've got. I'm going to be honest it really is. The biggest positive in my life is my family.
So that's just some of them. That's just some of the positives I've got going on.
I hope it comes across just how much better I'm feeling in myself now.
Because I am. Genuinely I can't explain it any more than I have about how different I've felt these last few days as opposed to I did the last couple of weeks.
I'm genuinely looking forward to what the future brings.
And I think lastly on the positives is the work that I'm doing for Multiple Sclerosis News today.
That columnist work is something I am massively proud of. I am hugely proud to have that opportunity to write for thousands of people across the world.
I'm able to just tell a story of what I'm thinking at any one time. It's something that I sit out in my studio and I tap away on my laptop.
And at times it's not always easy. I think to myself is that going to sound okay? Is that not going to sound okay?
But by the time I've finished it. By the time I've finished that particular article. I feel so good it's unreal.
I feel so... I'm just grateful for the opportunity. Genuinely I'm just so grateful for the opportunity.
And it's something I intend to improve at. You know I've never done anything like that previously.
So it is something that will take time for me to learn. That's just a fact.
But I'm learning. I'm trying as hard as I can. And I will improve. I will get better.
And actually, hopefully, just little bits that I do write. Hopefully somebody reads it and relates to it.
Because then it becomes not just me writing. It becomes helpful to somebody else. It becomes a way for them to realise they're not on their own.
Well I think that's probably where we're going to finish for today's show.
I'm going to tell you now. We are back. And there will be a new show every Monday.
And I've said that previously. But as I've explained. I was going through some pretty tough times.
Some pretty tough thought processes. They've passed. That has now passed.
So the show will be back every Monday. And I hope you're going to enjoy it.
I know I'm looking forward to being back. And I will speak to you all in a week's time.
Have a good one. Bye bye.