1 00:00:00,000 --> 00:00:12,720 Okay, here we go. My first proper podcast. The last one I did was, it was ripped from 2 00:00:12,720 --> 00:00:20,560 a video that I did on Facebook a little while ago. It was just explaining how the last 10 3 00:00:20,560 --> 00:00:28,560 years have gone and where we're up to now. With this, I think I'll do a proper introduction 4 00:00:28,560 --> 00:00:37,680 to myself. My name's Michael. I prefer Mike. So by all means, call me either or. Believe 5 00:00:37,680 --> 00:00:46,960 me, I've been called worse. I just think with this, I'm planning on doing a bit of talking 6 00:00:46,960 --> 00:00:59,680 and trying to get out in the world where I'm at currently with regards to my multiple sclerosis. 7 00:00:59,680 --> 00:01:06,760 On top of that, hopefully talking about this sort of stuff can help others because I've 8 00:01:06,760 --> 00:01:13,520 only been going through this really since back end of February this year when as I said 9 00:01:13,520 --> 00:01:22,640 in that first podcast, the doctor sat me down and told me what he told me. But there's people 10 00:01:22,640 --> 00:01:31,600 who have been going through this for a very, very, very long time. Hopefully, hopefully 11 00:01:31,600 --> 00:01:38,760 if I can talk about this, I can help somebody that doesn't necessarily know what to think 12 00:01:38,760 --> 00:01:46,440 or how to feel about the condition because let's be honest, it really isn't a nice condition 13 00:01:46,440 --> 00:01:56,120 at all. On a daily basis, there's something. I'm not going to go into detail at the moment 14 00:01:56,120 --> 00:02:06,960 on exactly where my condition is. I have recently had a conversation with the MS coordinator 15 00:02:06,960 --> 00:02:16,480 and I've been told that the MS nurse is taking my file to the MS MDT unit in Nottingham to 16 00:02:16,480 --> 00:02:25,680 discuss treatment. But I'll go into that in further detail down the line when everything's 17 00:02:25,680 --> 00:02:33,960 been confirmed. But from this point of view, all I'm interested in is getting on some sort 18 00:02:33,960 --> 00:02:39,320 of treatment because to be honest with you, been quite a downward turn the last few months. 19 00:02:39,320 --> 00:02:46,240 I'll be totally straight. I've gone from being able to walk to work, which is about a mile 20 00:02:46,240 --> 00:02:59,000 and a half away roughly, to I now use a mobility scooter to get myself to work, which yeah, 21 00:02:59,000 --> 00:03:05,640 I'll be honest with you. At the time when I first started that, the thought process 22 00:03:05,640 --> 00:03:11,240 going through my head was very much, I'm 39 years old, there's no way I should be having 23 00:03:11,240 --> 00:03:19,080 to use a mobility scooter. Do you know what? Best thing that's happened to me for a long 24 00:03:19,080 --> 00:03:25,960 time because actually I feel like I've got some independence back. You know, I can get 25 00:03:25,960 --> 00:03:33,760 out to work, I can get myself home from work, if we need things from the shop, I can jump 26 00:03:33,760 --> 00:03:41,200 on it, I can nip up the shop. I've got my crutches for when I'm walking around. As I've 27 00:03:41,200 --> 00:03:50,400 mentioned in previous videos rather than anything else, I do have names for my mobility aids. 28 00:03:50,400 --> 00:03:58,760 I have my crutches, which are sticky, sticky, stick, stick and stick, stick, sticky stick. 29 00:03:58,760 --> 00:04:07,240 I have my mobility scooter. That's Eleanor. One day if I'm really, really lucky, I'll 30 00:04:07,240 --> 00:04:13,200 find the nitrous button and I'll be able to send her flying down the road rather than 31 00:04:13,200 --> 00:04:20,760 the four mile an hour that she does. And I have my wheelchair, which is the DeLorean. 32 00:04:20,760 --> 00:04:25,800 One day that will get up to 88 mile an hour and I'll be able to go back in time. Two 33 00:04:25,800 --> 00:04:32,800 guesses what I would change if I could go back in time. I think a lot of us would be 34 00:04:32,800 --> 00:04:41,280 very similar in that. But yeah, I mean, that's the sort of thing. I mean, I do try and laugh 35 00:04:41,280 --> 00:04:48,920 and joke as much as possible because for me, I want to stay as positive as I can. Because 36 00:04:48,920 --> 00:04:57,860 the minute I stop staying positive, I don't know where we would be. And that's not a road 37 00:04:57,860 --> 00:05:05,960 I intend to go down. Positivity for me personally is the key. And I'm very, very lucky because 38 00:05:05,960 --> 00:05:11,640 I've got a good family behind me. My wife is absolutely fantastic. She does everything 39 00:05:11,640 --> 00:05:22,120 she can for me and more. So I am, I'm very, very lucky. I really, really am. And to that 40 00:05:22,120 --> 00:05:30,920 end, further down the track, maybe we'll meet some family members that are there for me 41 00:05:30,920 --> 00:05:38,640 to help. You never know. I might be able to convince them to come on the podcast and say 42 00:05:38,640 --> 00:05:46,040 some bits and pieces and see how they're coping with everything. Because let's be fair, MS 43 00:05:46,040 --> 00:05:52,040 is awful for the person. It really is. For me personally, I hate this condition with 44 00:05:52,040 --> 00:06:02,240 a passion. But you know what? My family are going through bits and pieces as well, seeing 45 00:06:02,240 --> 00:06:13,160 me struggle, seeing me find things difficult. So it can't be easy for them. And you know 46 00:06:13,160 --> 00:06:21,080 what? They're all brilliant. So again, I am very, very lucky. To those of you out there 47 00:06:21,080 --> 00:06:32,440 that are not so lucky, please find somewhere to talk. There is charities out there. You 48 00:06:32,440 --> 00:06:38,120 know, for me personally, when I was first told back end of February to expect the diagnosis 49 00:06:38,120 --> 00:06:47,760 of MS, I was lucky. And I contacted the MS Society and I had a good chat, really, really 50 00:06:47,760 --> 00:06:55,040 good chat because I didn't know what to expect. And I was absolutely terrified. That was a 51 00:06:55,040 --> 00:07:01,880 really good conversation. The lady I spoke to, brilliant. She didn't want to get off 52 00:07:01,880 --> 00:07:07,200 the phone. She was quite happy talking, giving me all the advice that she possibly could. 53 00:07:07,200 --> 00:07:17,680 And it was massively appreciated. So that's why on the 22nd of October, me, my dad and 54 00:07:17,680 --> 00:07:25,640 my brother, we're going down to London to do the MS charity walk. We're raising money 55 00:07:25,640 --> 00:07:33,800 for the MS Society. And do you know what? I absolutely cannot wait. Really looking forward 56 00:07:33,800 --> 00:07:45,920 to it. Going back to a bit about me, I do still work full time. And I will do that for 57 00:07:45,920 --> 00:07:53,080 as long as I possibly can. Because it keeps me ticking over. And actually, I quite like 58 00:07:53,080 --> 00:08:00,920 going out to work. I don't know why. I'd take a lottery win to change that. But for 59 00:08:00,920 --> 00:08:08,440 the time being, a day of work is exactly wherever I want to be. But yeah, I mean, at the end 60 00:08:08,440 --> 00:08:14,400 of the day, there's not really much else to know about me. I mean, until my condition 61 00:08:14,400 --> 00:08:21,800 started getting a lot worse. I was very much into airsoft, which was brilliant. I really 62 00:08:21,800 --> 00:08:28,720 enjoyed it. Getting out with the lads, running around the woods. It was really good fun. 63 00:08:28,720 --> 00:08:35,480 Lucky, there's a good site near where I live. And we was able to get over to that site. 64 00:08:35,480 --> 00:08:46,720 Yeah, fair bit. And have a lot of fun. In terms of where I am with my MS, as I've explained, 65 00:08:46,720 --> 00:08:56,240 I'm now having to use a mobility scooter to get around. Well, that's because I'm really 66 00:08:56,240 --> 00:09:06,360 struggling with things like fatigue. I can't walk very far at all. And if I do walk literally 67 00:09:06,360 --> 00:09:15,800 just a few yards, I get to the point where I could curl up and go to sleep. It's not 68 00:09:15,800 --> 00:09:25,880 nice. It's really not nice. Which is why I've gone down that route. I have what has been 69 00:09:25,880 --> 00:09:35,280 explained to me as MS hug. It's very much a case of top of the stomach, across the bottom 70 00:09:35,280 --> 00:09:42,040 of the rib cage, feels like a tight band. And it is horrible when it's actually there 71 00:09:42,040 --> 00:09:49,360 every day, has been there every day for many, many months now. Some days not quite so bad. 72 00:09:49,360 --> 00:09:59,160 But on the whole, I can always feel it. I'm on some painkillers for a lot of the symptoms 73 00:09:59,160 --> 00:10:05,920 I've got. And they do help. Again, I was very much a case of when they prescribed them, 74 00:10:05,920 --> 00:10:13,760 I was saying, I'm not taking painkillers, I'll be okay. Guess what? I was wrong. It 75 00:10:13,760 --> 00:10:23,000 was necessary. I absolutely needed to use them. I've got a lot of numbness in my feet 76 00:10:23,000 --> 00:10:30,640 and legs to the point actually I could pinch myself really, really hard on my legs. I really 77 00:10:30,640 --> 00:10:39,320 wouldn't feel it. I have an issue, which is a reason with my left arm, from time to time 78 00:10:39,320 --> 00:10:46,480 I will get pain on my left forearm and it will shoot all the way down to my hand. My 79 00:10:46,480 --> 00:10:53,200 hand will then make a fist, my middle finger will twitch uncontrollably. It doesn't last 80 00:10:53,200 --> 00:11:01,040 particularly long, but it's very uncomfortable, very painful. And when I'm out and about, 81 00:11:01,040 --> 00:11:07,040 it's a little bit embarrassing. I tend to sort of try and hide my hand under a table 82 00:11:07,040 --> 00:11:11,880 or whatever else if we're out and about. I've sat down, if we're walking around I'll sort 83 00:11:11,880 --> 00:11:17,080 of do what I can so people don't see it. And you know what? There's nothing to be embarrassed 84 00:11:17,080 --> 00:11:24,320 about. It just is what it is. It's part of the condition. And something I've got to get 85 00:11:24,320 --> 00:11:34,960 used to. Because things are going to happen in public. I've had many, many falls. Thankfully 86 00:11:34,960 --> 00:11:41,560 the falls aren't quite as bad now as they were a few weeks ago. I mean I went for a 87 00:11:41,560 --> 00:11:49,280 point of, to be honest with you, like Bambi on ice. I couldn't get up and stand and move 88 00:11:49,280 --> 00:11:56,600 around much without falling over. And it was getting a little bit scary to be honest with 89 00:11:56,600 --> 00:12:04,800 you. But been okay for the last few weeks. Not had quite so many falls, had a few but 90 00:12:04,800 --> 00:12:14,200 not quite so many. And that's a positive. I know that's going to change but it's a positive. 91 00:12:14,200 --> 00:12:20,880 I'm very interested to know how other people are getting on. Because the more we talk about 92 00:12:20,880 --> 00:12:26,880 this sort of stuff, in my opinion, the better. We get the word out there so people understand 93 00:12:26,880 --> 00:12:37,160 about MS. Because there is times where actually you're not having a particularly bad day. 94 00:12:37,160 --> 00:12:43,640 You could be classed as a good day. And I'm aware there is occasions where people say, 95 00:12:43,640 --> 00:12:53,440 oh you look fine. Might look fine my friend but doesn't mean I am. It's good to look 96 00:12:53,440 --> 00:13:04,960 it sometimes. But believe me the stuff going on internally, absolutely not fine. Well I 97 00:13:04,960 --> 00:13:10,680 just thought I'd put together a little podcast. I am totally new at this. I never even thought 98 00:13:10,680 --> 00:13:17,880 about doing this until one of my sons, he made the suggestion about doing it a few days 99 00:13:17,880 --> 00:13:24,880 ago. So I sort of took his suggestion and I've ran with it. And I really want to do 100 00:13:24,880 --> 00:13:35,680 this. I really want to do these podcasts, get the word out there and see if we can improve 101 00:13:35,680 --> 00:13:45,960 perceptions about MS. And again, I am a fun person. I will have a laugh and a joke. But 102 00:13:45,960 --> 00:13:53,840 at the same time, just because I'm laughing and joking doesn't mean everything's okay. 103 00:13:53,840 --> 00:14:02,040 Well I hope you've all enjoyed having a listen. I will aim to do podcasting hopefully once 104 00:14:02,040 --> 00:14:09,200 a week. Maybe more if there's interest. I'm quite happy to do more. I will talk about 105 00:14:09,200 --> 00:14:16,960 lots of different things to do with MS. And from time to time I'll talk about some other 106 00:14:16,960 --> 00:14:27,120 stuff too because there's more to life than just MS. Something my wife, she said to me 107 00:14:27,120 --> 00:14:41,160 a few days ago and it really struck a chord with me. I've got MS. MS has not got me. Hopefully, 108 00:14:41,160 --> 00:14:47,760 hopefully other people can see that too. Well you all have a really good day. I will talk 109 00:14:47,760 --> 00:14:53,200 to you again very, very soon. Please feel free if you've got some constructive criticism 110 00:14:53,200 --> 00:14:58,000 or anything else because again I am very new to this. I am just learning. I'll gratefully 111 00:14:58,000 --> 00:15:25,000 accept it because maybe we can learn together. Have a good day. Bye bye.