1 00:00:00,000 --> 00:00:09,920 Hello, welcome to the next episode of my podcast. I hope you've all had a good week. I hope 2 00:00:09,920 --> 00:00:15,760 it's been as good as it can possibly be for you. My week's been a bit hit and miss, I've 3 00:00:15,760 --> 00:00:22,720 got to be honest. It's not been the best, probably not been the worst either. On today's 4 00:00:22,720 --> 00:00:30,440 show, it's going to be a bit of a different show today. I've got a bit of a, I'm going 5 00:00:30,440 --> 00:00:36,880 to call it a treat for you all but it probably isn't, I've written another poem. Anyone that 6 00:00:36,880 --> 00:00:43,760 is on my social media accounts or my YouTube will have seen it. This poem is called I Won't 7 00:00:43,760 --> 00:00:54,080 Quit. I've also put up the poem on my website which is Mike'sMSJourney.com. Please pop 8 00:00:54,080 --> 00:00:59,920 over there. I will say somehow I've managed to put all the links to my social media accounts 9 00:00:59,920 --> 00:01:04,360 actually on that website as well. So all you've got to do is click on the little picture for 10 00:01:04,360 --> 00:01:10,920 the social media and you can find yourself there. Come and join me and you'll see what 11 00:01:10,920 --> 00:01:17,400 other bits and pieces I've got going on. I've also on today's show going to talk very briefly 12 00:01:17,400 --> 00:01:25,400 about a neurology appointment that I've got booked and back end of the show today, I'm 13 00:01:25,400 --> 00:01:32,880 going to do some straight talking. I know around Christmas time I did an episode that 14 00:01:32,880 --> 00:01:44,240 was very much straight talking. It really was a case of me laying things bare. Yeah, 15 00:01:44,240 --> 00:01:51,280 I'm afraid to an extent I need to do that again on today's show. There's some real 16 00:01:51,280 --> 00:01:56,560 straight talking as I've said, some real onesties and there's some bits and pieces I've got 17 00:01:56,560 --> 00:02:03,280 to get off my chest. So I'd like to take this opportunity to thank each and every one of 18 00:02:03,280 --> 00:02:08,320 you again. I know I do that on every show. There's a reason for that because actually 19 00:02:08,320 --> 00:02:17,520 I am incredibly grateful for you all listening. I really am because I've said it a million 20 00:02:17,520 --> 00:02:26,080 times I'm going to say it again. I'm sitting here in my shed, brick shed, you know, we've 21 00:02:26,080 --> 00:02:34,040 painted the walls and I've got my shirt up with my medal from the MS Society Walk last 22 00:02:34,040 --> 00:02:38,760 year. I've got my certificate on the wall for it. Other than that, it's just normal 23 00:02:38,760 --> 00:02:47,440 shed stuff sitting here. I sit here and I talk into my microphone, I talk into my phone 24 00:02:47,440 --> 00:02:55,400 and you know what, just talking to you all actually really helps me. And again, I hope 25 00:02:55,400 --> 00:03:03,400 it helps even just one of you, genuinely just one of you. If it does, yeah, in which case 26 00:03:03,400 --> 00:03:10,000 that actually puts a massive smile on my face. Okay, well as I said, I'm going to start 27 00:03:10,000 --> 00:03:21,320 today by reading you my new poem. As I say, I entitled this poem, I Won't Quit, because 28 00:03:21,320 --> 00:03:26,040 no matter what, no matter what you hear from me, I'm not going to quit. I'm going to continue 29 00:03:26,040 --> 00:03:35,160 to fight because that's all I know. I don't know how to give up. No matter what, no matter 30 00:03:35,160 --> 00:03:41,720 what goes on, giving up is not going to happen. There will be days and there has been days 31 00:03:41,720 --> 00:03:50,320 where I am really struggling. I still ain't going to give up. So, please bear with me. 32 00:03:50,320 --> 00:04:02,480 Here comes. Well, here we are, MS. Yesterday, today and a couple of weeks gone by. You've 33 00:04:02,480 --> 00:04:09,600 had your way. Pains, aches, aches and pains. Oh, don't forget the tiredness and the fuzzy 34 00:04:09,600 --> 00:04:20,720 head. Like a phoenix, I will rise. I won't give in. I won't back down. I won't quit. 35 00:04:20,720 --> 00:04:27,120 I'm still new to this. You're nasty games. You're nasty tricks. Actually, you're just 36 00:04:27,120 --> 00:04:35,160 nasty. Well, I've said it once and I'll say it again. I won't give in. I won't back down. 37 00:04:35,160 --> 00:04:43,560 I won't quit. So, bring it on. I will fight back. Every battle and every attack will be 38 00:04:43,560 --> 00:04:53,040 met by me and those that have my back. No matter what, one last time, I won't give in. 39 00:04:53,040 --> 00:05:02,560 I won't back down. I won't quit. Thank you. Thank you for listening. And as I say, I'm 40 00:05:02,560 --> 00:05:09,160 not a poet. I do not profess to be a poet. It's just these things tick around in my brain 41 00:05:09,160 --> 00:05:15,760 and I have to put them down on paper. So, that's what I do because it helps. Bear with 42 00:05:15,760 --> 00:05:29,000 me. I'm just having a slurp of my cup of tea. Lovely. Okay. So, second part of the show 43 00:05:29,000 --> 00:05:39,280 today. Gonna explain. I've managed to get booked in for a neurology appointment on Monday. 44 00:05:39,280 --> 00:05:48,000 That was a last minute thing and I will explain later in the show as to why. I've asked to 45 00:05:48,000 --> 00:05:55,800 see my brain scan. One to prove there's actually a brain in there, but let's not go that far. 46 00:05:55,800 --> 00:06:03,120 But I want to know exactly how many lesions there is on my brain because all the letter 47 00:06:03,120 --> 00:06:11,640 says is a few. A few, that could mean two, that could mean three, that could mean ten, 48 00:06:11,640 --> 00:06:20,760 that could mean whatever. So, I want to know. And the reason I want to know is because I've 49 00:06:20,760 --> 00:06:30,360 got to the point now with all this waiting for treatment and with the MSMDT doing what 50 00:06:30,360 --> 00:06:35,400 they're doing, slowing things down, I've got to the point I'm actually going to make a 51 00:06:35,400 --> 00:06:45,720 formal complaint. I think the time has come for me to start fighting a little bit harder 52 00:06:45,720 --> 00:06:55,880 because I'm struggling. I'm actually struggling quite a lot. Things are getting quite bad 53 00:06:55,880 --> 00:07:04,320 and I'm not getting any treatment. Again, that will come in the next part of the show. 54 00:07:04,320 --> 00:07:18,680 But yeah, my date of diagnosis was the 27th of June 2022. I'm still sat here with no treatment. 55 00:07:18,680 --> 00:07:24,960 That now is going to lead us on to the third part of today's show. And those of you watching 56 00:07:24,960 --> 00:07:32,840 on YouTube will see I'm sat here with a smile on my face. Yeah. Let me be totally straight 57 00:07:32,840 --> 00:07:40,160 with you. That ain't a happy smile. Because the gloves are off a little bit now. I'm going 58 00:07:40,160 --> 00:07:49,960 to be honest. The gloves are off and it's time for me to start pushing back because 59 00:07:49,960 --> 00:08:00,680 it's over six months since my diagnosis. This is a chronic condition as we're all aware. 60 00:08:00,680 --> 00:08:12,120 This isn't a game. This is not a bit of fun. So I'm being sat left waiting purely because 61 00:08:12,120 --> 00:08:21,840 the MSMDT team want to cross T's and dot I's. I'm sorry but you're playing games with my 62 00:08:21,840 --> 00:08:26,680 life now. And I'm not saying, don't get me wrong, I am not saying I'm dying or anything 63 00:08:26,680 --> 00:08:35,560 like that. But what I am saying is you're playing games with my ability to just be me. 64 00:08:35,560 --> 00:08:40,160 Now I've got a script written in front of me and I will refer to that at times during 65 00:08:40,160 --> 00:08:47,080 this little rant. But actually a lot of this is coming direct from the heart. I'm going 66 00:08:47,080 --> 00:08:55,640 to be honest with you because I'm going to be totally straight. I need treatment. I needed 67 00:08:55,640 --> 00:09:04,000 treatment six months ago. I need treatment. It's not going to roll back time. I get that. 68 00:09:04,000 --> 00:09:11,960 But actually it can make the roll stop because quite honestly those that know me know I am 69 00:09:11,960 --> 00:09:20,800 really struggling. I am deteriorating quite fast. Things aren't easy and I know they're 70 00:09:20,800 --> 00:09:31,320 not for anyone with this condition. This condition is horrible. It is evil. But I don't understand 71 00:09:31,320 --> 00:09:39,440 why things have to be so difficult to get treatment. If I got treatment six months ago 72 00:09:39,440 --> 00:09:48,720 I would not be struggling to the extent I am now. Chances are I would have stayed at 73 00:09:48,720 --> 00:09:56,840 that level for a bit longer. I would have stayed where walking was difficult. Yes I 74 00:09:56,840 --> 00:10:04,680 would have been walking with crutches. I probably at some point would have needed my mobility 75 00:10:04,680 --> 00:10:11,320 scooter. But do you know what? That might have been stretched out a little bit longer. 76 00:10:11,320 --> 00:10:17,800 There's other things going on at the moment that I can't talk about and I will. Don't 77 00:10:17,800 --> 00:10:23,240 get me wrong. Everything will come out in the wash. There's a few bits I've got to 78 00:10:23,240 --> 00:10:31,280 keep under my hat for the time being. But you will all hear about them at some point. 79 00:10:31,280 --> 00:10:37,400 I don't understand it. You work for the NHS. You're there to care for people and you're 80 00:10:37,400 --> 00:10:43,320 there to give people treatment. And I get, I totally understand it. It's the process, 81 00:10:43,320 --> 00:10:52,640 it's the system. The system is wrong. The process is wrong. Cold hard fact. You cannot 82 00:10:52,640 --> 00:11:03,360 diagnose somebody with a condition that is known to get worse untreated. You cannot then 83 00:11:03,360 --> 00:11:10,440 wait six plus months to give that person treatment even if that treatment is just going to hold 84 00:11:10,440 --> 00:11:21,120 them where they were at that point. Sorry. It's wrong. It's flat wrong. I don't agree 85 00:11:21,120 --> 00:11:28,200 with it at all. And I'm going to be straight. If we meet in the street, I'm going to look 86 00:11:28,200 --> 00:11:32,160 you in the eye and I'm going to smile at you. Everyone. I will. Because that's the kind 87 00:11:32,160 --> 00:11:42,080 of person I am. But actually, I ain't doing good. To be honest with you, I'm not doing 88 00:11:42,080 --> 00:11:50,440 good. I've got pains that actually I can't explain. I've got thoughts and feelings that 89 00:11:50,440 --> 00:11:59,240 I just again don't want to explain. Because let's be totally honest with you. I'm getting 90 00:11:59,240 --> 00:12:07,240 frustrated. Bear with me. I've got a couple of teas in my hand. Do you know what? Frustrated 91 00:12:07,240 --> 00:12:19,800 don't actually quite cover it. I'm angry. I am incredibly angry. Because genuinely, 92 00:12:19,800 --> 00:12:28,480 I feel like I'm being left to rot. And at the moment, I am rotting. I'm fighting every 93 00:12:28,480 --> 00:12:37,120 single day. And that fight ain't going anywhere. It really isn't. But you know what? Somebody 94 00:12:37,120 --> 00:12:43,440 that's able come and stand beside me and fight. My family and friends are stood right beside 95 00:12:43,440 --> 00:12:50,560 me. They're fighting. They are incredible. Genuinely incredible. But actually, those 96 00:12:50,560 --> 00:12:58,920 that are able to help that little bit more, the ones that can medically help, I feel like 97 00:12:58,920 --> 00:13:05,800 you're ignoring me. I feel like you're not interested. I've said it, and I will say it 98 00:13:05,800 --> 00:13:12,080 again. I feel like I's are being dotted. I feel like T's are being crossed. It's not 99 00:13:12,080 --> 00:13:22,840 a game. This is not paperwork. This is my life. And at the moment, that's actually being 100 00:13:22,840 --> 00:13:30,360 made more difficult to live. And I'm not, I hope again I will say it, I am not saying 101 00:13:30,360 --> 00:13:37,240 under any circumstance am I dying or anything like that. I'm not. But actually, my quality 102 00:13:37,240 --> 00:13:49,600 of life is becoming difficult. Walking. Really, really, really, really tough. I fight through 103 00:13:49,600 --> 00:14:01,200 and I manage. Because I've got to. But actually, do you know what? Each step ain't easy. Each 104 00:14:01,200 --> 00:14:15,040 step hurts. And I'm having to do everything I can to just stand on a daily basis. And 105 00:14:15,040 --> 00:14:23,680 I will continue to do so. I will continue to do so. Because that's what I've got to 106 00:14:23,680 --> 00:14:29,800 do. But those that medically can help, pull your finger out. Let's get some help. Now 107 00:14:29,800 --> 00:14:34,280 as a family, I will be honest with you, my dad, and I want to give him a massive thank 108 00:14:34,280 --> 00:14:41,360 you for this, he's been in touch with our local MP to make a complaint about this amount 109 00:14:41,360 --> 00:14:48,360 of time I'm being sat and left. And do you know what? Thank you. Thank you for making 110 00:14:48,360 --> 00:14:54,320 that complaint. I should have done it a long time ago but I was trying to play Mr Nice 111 00:14:54,320 --> 00:14:58,520 Guy trying to be, oh yeah, you know, they're getting there. No, they're not getting there, 112 00:14:58,520 --> 00:15:08,640 they're just sat leaving me. So dad, thank you. The MP's office have been in touch and 113 00:15:08,640 --> 00:15:15,320 they are getting in touch with NHS England to start querying this as to why, after six 114 00:15:15,320 --> 00:15:23,160 months, why am I still being left untreated? I'm getting worse here folks. I'm getting 115 00:15:23,160 --> 00:15:31,960 worse, quite a lot worse. Step up. Step up and give me the help that I need just to stay 116 00:15:31,960 --> 00:15:39,800 where I am. I don't want the world, I really don't, all I want is the medical help to keep 117 00:15:39,800 --> 00:15:47,000 me where I am. Genuinely, I'm not asking for the world. Okay. Well, I think that's 118 00:15:47,000 --> 00:15:51,520 probably enough for today. I want to thank you all for listening. I know this has probably 119 00:15:51,520 --> 00:15:56,000 been a very difficult listen for some but actually again, it's something I've had to 120 00:15:56,000 --> 00:16:05,000 get off my chest because it sits there and I need to get it out. Genuinely, thank you. 121 00:16:05,000 --> 00:16:10,480 I will update you all on how the appointment with the neurologist goes. As I say, that's 122 00:16:10,480 --> 00:16:17,320 tomorrow, Monday. This podcast is released on that day. So I may, depending on how it 123 00:16:17,320 --> 00:16:24,440 goes, I may post up a very short trailer just to give you an update or I'll hang fire and 124 00:16:24,440 --> 00:16:30,840 I'll update you all next Monday, so the Monday after on the next podcast. Okay. Thank you 125 00:16:30,840 --> 00:16:36,800 all for listening. I know it's kind of been an easy one. Massively appreciated. Speak 126 00:16:36,800 --> 00:16:48,040 soon. Bye bye.