1 00:00:00,000 --> 00:00:08,520 Hello everyone, how are we all doing today? We're all doing okay. I'm back again this 2 00:00:08,520 --> 00:00:15,560 week. I'm going to try and put some fun and laughter in and just have a bit of a conversation 3 00:00:15,560 --> 00:00:23,080 about what I'm expecting from my treatment on Tuesday and just a few other little bits 4 00:00:23,080 --> 00:00:30,640 and pieces. I'm also kind of trying to learn how to use my soundboard properly. So give 5 00:00:30,640 --> 00:00:40,960 me just a second because if this goes wrong there will be a very loud... I did a good! 6 00:00:40,960 --> 00:00:49,280 See I got clapped! Come on that's always a good thing. So yeah, I mean let's start with 7 00:00:49,280 --> 00:00:54,560 the basics this week. Things have actually not been too bad, I'm going to be totally 8 00:00:54,560 --> 00:01:03,720 honest. Not been too bad at all. I've had kind of a bit of a relaxed and chilled week. 9 00:01:03,720 --> 00:01:09,880 Obviously I have now set up the just giving for my jumping out of the aeroplane. Come 10 00:01:09,880 --> 00:01:24,680 on that absolutely deserves... Yeah okay. But yeah that's all set up on my just giving. 11 00:01:24,680 --> 00:01:31,120 Any donations would be incredibly gratefully received. I have got a figure that I've put 12 00:01:31,120 --> 00:01:36,040 which is quite high. It's a lot higher than any other time that I've fundraised. I would 13 00:01:36,040 --> 00:01:44,640 love to get to £500. All of it, every single penny to the MS Society for them to use however 14 00:01:44,640 --> 00:01:52,840 they wish to use in the fight against MS. Which let's be fair, that's a fight that I've 15 00:01:52,840 --> 00:01:59,080 absolutely got my gloves on and I'm ready to do. And the MS Society absolutely doing 16 00:01:59,080 --> 00:02:04,280 their bit in a massive way they really are. I've said many times about how grateful I 17 00:02:04,280 --> 00:02:08,960 am to them and that stays. I'll be honest that really does stay incredible. Absolutely 18 00:02:08,960 --> 00:02:15,920 incredible charity. But yeah I mean that's that. It's all booked so the 29th of October. 19 00:02:15,920 --> 00:02:24,760 I'll be jumping out of an aeroplane. Yeah again massively looking forward to it really 20 00:02:24,760 --> 00:02:31,920 am. Can't wait. Really really cannot wait. Langer airfield just outside Nottingham. Bring 21 00:02:31,920 --> 00:02:40,560 it on. Bring it on. I'm not going to promise I'm not going to be a little bit worried when 22 00:02:40,560 --> 00:02:46,560 I'm up in that plane getting ready to jump out. But no honestly really looking forward 23 00:02:46,560 --> 00:02:53,200 to it. But anyway that's enough for that one for now. In terms as I say of the week itself 24 00:02:53,200 --> 00:02:58,960 it's actually been half decent. I mean weather has been incredibly hot. Wow it's been warm. 25 00:02:58,960 --> 00:03:05,480 I'll be honest with you painfully so. I've been screaming for summer all summer because 26 00:03:05,480 --> 00:03:15,000 it's been incredibly wet. We get a summer and I start complaining over it. I mean come 27 00:03:15,000 --> 00:03:21,440 on come on you want it you get it accept it. It's just been so humid it's unreal. It really 28 00:03:21,440 --> 00:03:31,200 has been so so humid. I don't know that's standard British weather. Honestly wow give 29 00:03:31,200 --> 00:03:36,160 me 25 degrees and comfortable. I'm happy with that. Really really happy with that. I'll 30 00:03:36,160 --> 00:03:41,920 tell you that with a smile on my face without a doubt. But yeah I mean this this heat is 31 00:03:41,920 --> 00:03:49,760 unreal. I mean I'm sat here now. If you're looking at me on YouTube I'm sat in my studio. 32 00:03:49,760 --> 00:03:56,520 I've actually got the door wide open because this is like a sauna in here. It's awful it's 33 00:03:56,520 --> 00:04:06,400 really really warm. I'm gonna be fair. I just without the door open I'll be honest I probably 34 00:04:06,400 --> 00:04:12,200 wouldn't been able to sit and do the podcast this week because I'd be melting. And I know 35 00:04:12,200 --> 00:04:16,520 I need to kind of have a check on my weight a little bit just to make sure I'm under that 36 00:04:16,520 --> 00:04:27,400 15 stone for me jump. But honestly it's absolutely crazy. Crazy how hot it's been. And now we 37 00:04:27,400 --> 00:04:33,840 get a bit of rain. Yes it means I'm gonna complain about the rain. I know I've got it. 38 00:04:33,840 --> 00:04:39,920 I understand. You just can't be happy with the weather no matter how it is. I get it. 39 00:04:39,920 --> 00:04:47,120 I get it. You know I'm right there with it. But yeah I mean in terms of how the weather's 40 00:04:47,120 --> 00:04:53,720 made the MS. Because normally I don't really have a big deal if I'm honest with regards 41 00:04:53,720 --> 00:05:05,800 to the hot weather. But actually this week what I have noticed is one control in my temperature. 42 00:05:05,800 --> 00:05:13,760 I actually can't do it. I'll be totally straight. I really can't actually control my temperature. 43 00:05:13,760 --> 00:05:20,040 I get hot and I stay hot. Doesn't matter what I do. It really really doesn't. I'm not gonna 44 00:05:20,040 --> 00:05:25,200 guarantee that's an MS thing because it might be it might not be. But it's very strange. 45 00:05:25,200 --> 00:05:29,960 I've never had it before where I can have a cold shower and literally within a minute 46 00:05:29,960 --> 00:05:35,240 I am pouring with sweat again. It's a strange old thing I'll be honest with you. It's a 47 00:05:35,240 --> 00:05:45,200 really strange old thing. But again it could be it might not be. It's causing me to get 48 00:05:45,200 --> 00:05:51,800 very tired. I will say that the heat is making me really really tired. Which is awkward because 49 00:05:51,800 --> 00:06:00,960 it's so hot. You go to bed and it's too hot to sleep. But I'm tired I want to go sleep. 50 00:06:00,960 --> 00:06:06,360 It just doesn't play ball at all. But I'm trying. I'm trying. I'm getting me nut down 51 00:06:06,360 --> 00:06:12,160 as and when I can. But again the other thing with me when I get too hot I don't really 52 00:06:12,160 --> 00:06:17,920 eat much. I just don't get hungry. I don't know what it is. I happily just eat salad 53 00:06:17,920 --> 00:06:24,400 solidly through hot weather. Yeah I can't figure that one out either. I really can't 54 00:06:24,400 --> 00:06:32,280 figure that one out at all. But yeah again with regards to the tiredness and whatever. 55 00:06:32,280 --> 00:06:37,320 Now that I do genuinely believe. That's the fatigue kicking in because just about everything 56 00:06:37,320 --> 00:06:47,000 that can ache go to sleep and just not want to work. That's exactly what happens. I'm 57 00:06:47,000 --> 00:06:52,960 going to be fair. Exactly what happens. So yeah I mean that I do think is weather based 58 00:06:52,960 --> 00:06:59,400 and it's kicking in the fatigue a bit. Again this is all kind of new. This is genuinely 59 00:06:59,400 --> 00:07:05,840 all kind of new. And it's stuff that I do need to learn. So I'm getting there. I'm 60 00:07:05,840 --> 00:07:10,880 plodding along with it. I'm plodding along with it. What I've got to say. I was going 61 00:07:10,880 --> 00:07:17,740 to leave it till further in the show but I've got to say. Last night Saturday night. Myself 62 00:07:17,740 --> 00:07:26,560 and Lisa we had a date night. We really decided on it very very late in the day. I'm going 63 00:07:26,560 --> 00:07:32,040 to be fair it was really really late in the day. The show started at 7.30 I think it was 64 00:07:32,040 --> 00:07:37,920 probably about 4 o'clock we booked our tickets. There was an 80's tribute band at the local 65 00:07:37,920 --> 00:07:47,560 Guildhall. And we both love 80's music. Simple as that. Absolutely fantastic. So when we 66 00:07:47,560 --> 00:07:55,800 got there. Went and took our seats. And they got me right from the start. Right at the 67 00:07:55,800 --> 00:08:04,080 very start I was hooked. Because they came out to the final countdown. I mean come on. 68 00:08:04,080 --> 00:08:10,080 What a tune. To come out to that. That was it. I was hooked. Absolutely. I don't think 69 00:08:10,080 --> 00:08:16,200 I stopped singing all night. I'm going to be honest. Every single song I was belting 70 00:08:16,200 --> 00:08:20,520 out and I felt so sorry for the people behind us that I was singing. But they were singing 71 00:08:20,520 --> 00:08:30,120 too. So was Lisa. It was great. And the performance was fantastic. It really was. I mean the two 72 00:08:30,120 --> 00:08:37,200 singers they were so smiley. Literally every single song. Doesn't matter what the song 73 00:08:37,200 --> 00:08:43,800 was. They were just smiling. They were happy. They were dancing. People say yeah that's 74 00:08:43,800 --> 00:08:50,200 their job. That's what they're doing. Kind of yeah. But at the same time. No. They clearly 75 00:08:50,200 --> 00:08:55,280 enjoy what they do. And that came across. And I'll be honest with you. It was excellent. 76 00:08:55,280 --> 00:09:00,320 It really was fantastic. And I'll be honest. I would happily go and see them again. I really 77 00:09:00,320 --> 00:09:07,520 would. There's no way I would say no. Because they were brilliant. Absolutely fantastic. 78 00:09:07,520 --> 00:09:14,200 But do you know what? It's the first time me and Lisa have been out on our own. Do you 79 00:09:14,200 --> 00:09:20,120 know what? I can't even tell you how long. It's been such a long time. It's unreal. So 80 00:09:20,120 --> 00:09:25,560 it was great. Having a bit of time to ourselves. Absolutely fantastic. Loved every minute of 81 00:09:25,560 --> 00:09:34,640 it. It was so nice just to have a bit of us time. A bit of us time. And it's not something 82 00:09:34,640 --> 00:09:40,160 we need every minute of every single day. But now and then. A little date doesn't hurt 83 00:09:40,160 --> 00:09:52,560 does it? A bit of happy. And a bit of reminding ourselves that actually we're not just parents. 84 00:09:52,560 --> 00:10:00,240 We're still a young couple. I'll get onto the young in a minute. But yeah. No. It was 85 00:10:00,240 --> 00:10:05,920 brilliant honestly. Absolutely fantastic. Loved every minute of it. Had a great time. 86 00:10:05,920 --> 00:10:11,000 And again this comes back to last week on the show when I was talking about positivity. 87 00:10:11,000 --> 00:10:19,240 That's how I want to live my life. That genuinely is how I want to live my life. With MS. And 88 00:10:19,240 --> 00:10:22,920 this is something I wasn't going to talk about. But do you know what? Actually yeah. Because 89 00:10:22,920 --> 00:10:34,360 this is me being really really positive. With MS. One thing that I've noticed quite quickly 90 00:10:34,360 --> 00:10:43,960 is it is so quick to drag you down. It really is. It is so quick to drag you down. And it's 91 00:10:43,960 --> 00:10:52,400 quite easy to let it. But if you're prepared to fight back. If you're prepared to say do 92 00:10:52,400 --> 00:10:58,800 you know what? No. I'm not going to allow myself to let it. I'm not going to allow myself 93 00:10:58,800 --> 00:11:13,480 to be a victim of it. I am going to take control. That absolutely is what I'm going to do. What 94 00:11:13,480 --> 00:11:17,480 I'm doing. Because I've gone through stages. I'm going to be totally honest. Again I said 95 00:11:17,480 --> 00:11:23,480 this last week. I went through stages where I genuinely I looked back at some of the podcasts 96 00:11:23,480 --> 00:11:31,640 I've recorded. I'm thinking actually they're quite negative. Well last week and this week 97 00:11:31,640 --> 00:11:37,360 I want to come across as positive. Because that's where my thought process is on it all 98 00:11:37,360 --> 00:11:46,160 now. Is positivity. It really is. Gloves on and fight this thing. I could have easily 99 00:11:46,160 --> 00:11:51,960 used a different word there. I didn't. I was impressed. Well done to me. I'm going to have 100 00:11:51,960 --> 00:12:08,800 to go for let's do a. So I just got a cheer. All I can say to that is yay. Bring on the 101 00:12:08,800 --> 00:12:13,720 positivity. But yeah I mean that is it. That's where my thought is. And do you know what? 102 00:12:13,720 --> 00:12:26,280 My thought is there. Big time. And that kind of comes on to my next point. Which I'm going 103 00:12:26,280 --> 00:12:32,800 to go with just very briefly. A nice little bit of positivity happened the other day. 104 00:12:32,800 --> 00:12:36,480 Now I know I've told some stories. Some negative stories in the past about when I've been out 105 00:12:36,480 --> 00:12:42,240 on my mobility scooter. Eleanor. I'm going to tell a positive story and it's only a very 106 00:12:42,240 --> 00:12:49,560 short one. So I went out on my scooter the other day. Lisa went to work. I left her when 107 00:12:49,560 --> 00:12:55,640 she got to work. I had a bit of a mooch around. Had a look around town. And I grabbed myself 108 00:12:55,640 --> 00:13:00,600 some lunch. And I thought to myself do you know what? I'm not going to sit and just eat 109 00:13:00,600 --> 00:13:07,880 my lunch randomly. I'm going to take my lunch and I'm going to sit by the river. And just 110 00:13:07,880 --> 00:13:15,080 relax. So I did. And oh my word it was lovely. Really enjoyed it. I had a pizza slice. I 111 00:13:15,080 --> 00:13:23,240 had a donut and I had a drink. Now while I'm sat there on my scooter. I looked down at 112 00:13:23,240 --> 00:13:27,640 the river and there's some fish. Quite big ones actually. I didn't realise how big the 113 00:13:27,640 --> 00:13:36,080 fish could get in the river with them. I didn't realise how big the fish could get. It was 114 00:13:36,080 --> 00:13:41,400 great. And I'm just looking at them and they're quite happy just sort of plodding around. 115 00:13:41,400 --> 00:13:47,120 And there was an older couple come walking past. Now the chap bless him asked me if I 116 00:13:47,120 --> 00:13:51,440 was okay because obviously I'm sat there on my mobility scooter just looking at the water. 117 00:13:51,440 --> 00:13:56,040 And yeah quite cheerfully explained I am fine. I was just having my lunch and watching the 118 00:13:56,040 --> 00:14:09,840 fish. And this chap bless him he told me how nice it was to see a young fella just sat 119 00:14:09,840 --> 00:14:18,320 nice and relaxed just sitting watching the fish and being calm. And do you know what? 120 00:14:18,320 --> 00:14:22,840 One it was great that he called me young. I'll take that all day. Don't get me wrong. 121 00:14:22,840 --> 00:14:27,840 I know I'm not old. 40 is not old but at the same time being called young that was brilliant. 122 00:14:27,840 --> 00:14:35,040 I'll take that all day every day. But yeah I mean it was such a nice little exchange 123 00:14:35,040 --> 00:14:40,040 and it was only very quick. But genuinely it was fantastic. Really really nice and it 124 00:14:40,040 --> 00:14:46,040 actually put a huge smile on my face. And I know this gentleman won't be listening to 125 00:14:46,040 --> 00:14:54,640 this podcast but a massive thank you to him. Absolutely huge thank you because again yes 126 00:14:54,640 --> 00:14:58,920 I've talked about negative things that's happened but if there's positive and good things that 127 00:14:58,920 --> 00:15:05,600 have happened you're right I'm going to talk about them. Absolutely spot on I'm going to 128 00:15:05,600 --> 00:15:10,600 because it's the right thing to do and it makes sense. So yeah I just thought I'd float 129 00:15:10,600 --> 00:15:18,600 that little story out because again positivity there's that word again positivity it's a 130 00:15:18,600 --> 00:15:26,080 really good word that. I like it. I like it a lot. I think that's going to lead me on 131 00:15:26,080 --> 00:15:36,640 to the final part of today's show. Tuesday is okravas day hopefully. I really do hope 132 00:15:36,640 --> 00:15:43,120 so. But yeah I mean in terms of the treatment itself I mean this is the first time I'm going 133 00:15:43,120 --> 00:15:50,480 to have the full bag. Previously the last two were half bags so I had them separate 134 00:15:50,480 --> 00:15:59,200 times. Now with the full bag I'm not entirely sure what to expect. I'm hoping my body goes 135 00:15:59,200 --> 00:16:06,080 oh this is nice I remember this. That's where my brain is I'll be honest with you. I'm quite 136 00:16:06,080 --> 00:16:13,680 hoping that's going to be the route and do you know what I think it will be. But I'm 137 00:16:13,680 --> 00:16:17,120 not actually sure how long it's going to take being a full bag again that's going to be 138 00:16:17,120 --> 00:16:24,360 totally dependent on how my body reacts to it. So I'll be in the hospital for quite a 139 00:16:24,360 --> 00:16:31,120 while Tuesday and what I need to also remember I need to pick up some antihistamines to take 140 00:16:31,120 --> 00:16:39,560 for a couple of days after just to kind of try and ward off any of the potential nastiness 141 00:16:39,560 --> 00:16:45,520 because it is something I was advised to do actually last time by my MS nurse was to use 142 00:16:45,520 --> 00:16:54,400 antihistamine. Now I'm going to be honest I feel like I should be nervous. I really 143 00:16:54,400 --> 00:17:03,400 do feel like there should be some nerves about having the treatment. Yeah there isn't. There 144 00:17:03,400 --> 00:17:10,560 is no nerves. Actually to an extent I'm kind of looking forward to it I'm going to be 145 00:17:10,560 --> 00:17:17,440 honest I'm kind of looking forward to it because again and I've said it previously I'm going 146 00:17:17,440 --> 00:17:22,400 to say again and this is not me being negative it's just me being straight and honest. Over 147 00:17:22,400 --> 00:17:31,760 the last month I have noticed kind of not nice effects where some of my regular issues 148 00:17:31,760 --> 00:17:41,680 have seemed worse. I have kind of not felt great in myself I've felt very very lethargic 149 00:17:41,680 --> 00:17:50,080 fatigued I've just not been great not been fantastic at all but I genuinely genuinely 150 00:17:50,080 --> 00:17:59,520 believe that could be part and parcel of that particular gap that gets talked about and 151 00:17:59,520 --> 00:18:05,680 once the treatments done it's another six months till the next one so I'm hoping then 152 00:18:05,680 --> 00:18:12,880 I get sort of five five and a half six months of calm. Don't get me wrong again with my 153 00:18:12,880 --> 00:18:19,720 symptoms they do not go away at all they do not go away they stay as they are nothing 154 00:18:19,720 --> 00:18:25,800 is going to change the symptoms that I have but it's okay because I've learnt kind of 155 00:18:25,800 --> 00:18:33,680 at this point how to live with it so genuinely it's a case of getting the treatment done 156 00:18:33,680 --> 00:18:44,560 getting it sorted and getting me back to a good level whereby I'm kind of kind of set 157 00:18:44,560 --> 00:18:50,960 in one place which should be lovely genuinely would be brilliant. I'm going to take the 158 00:18:50,960 --> 00:18:55,560 laptop with me I'm going to take my phone with me obviously and all things being well 159 00:18:55,560 --> 00:19:02,360 I'm going to do blogs I'm going to do pictures all that sort of stuff while I'm in the treatment 160 00:19:02,360 --> 00:19:09,720 because what I also want to do and I know I'm going through this but all of us are with 161 00:19:09,720 --> 00:19:16,000 MS we're all going through similar whether it's ocrevus or other treatments. If I can 162 00:19:16,000 --> 00:19:19,560 put that out there so people can see what it is and they've not started their treatment 163 00:19:19,560 --> 00:19:27,640 yet and if I can put good ideas out there good thoughts out there and don't get me wrong 164 00:19:27,640 --> 00:19:33,600 not everyone's the same not everyone is going to have a comfortable experience but if I 165 00:19:33,600 --> 00:19:43,600 put my honest experience out there it gives people an idea of one type of thing to expect 166 00:19:43,600 --> 00:19:47,960 and actually to me I think that's a good thing I really really do I think that's a good thing 167 00:19:47,960 --> 00:19:56,200 because yes there is good there's bad that's life that's the way things are but yeah if 168 00:19:56,200 --> 00:20:00,640 I can just help one person have that thought process of right okay this is how it works 169 00:20:00,640 --> 00:20:08,760 this is what goes on this is what kind of to expect that to me is exactly why I'm doing 170 00:20:08,760 --> 00:20:13,800 what I'm doing absolutely that is the reason I am doing what I'm doing so hopefully that 171 00:20:13,800 --> 00:20:26,760 can help someone again only time will tell but again with ocrevus it is quite a harsh 172 00:20:26,760 --> 00:20:36,000 treatment and then that's a simple fact it is quite a harsh treatment but that's not 173 00:20:36,000 --> 00:20:43,800 actually concerning me it really isn't because of the the two half bags it's kind of given 174 00:20:43,800 --> 00:20:53,520 me that thought process of for five months I was what I would class I'm going to be straight 175 00:20:53,520 --> 00:20:58,440 what I would class as stable yes the foot drop still there yes the numbness is still 176 00:20:58,440 --> 00:21:05,320 there I will come to numbness in a second actually the numbness is still there yes I've 177 00:21:05,320 --> 00:21:10,280 still got the MS hug that doesn't go away it's there on a daily basis some days worse 178 00:21:10,280 --> 00:21:16,000 than others I get that ocrevus isn't going to get rid of that it's not going to cure 179 00:21:16,000 --> 00:21:23,880 what's already in play but actually five months there was nothing new so I am really looking 180 00:21:23,880 --> 00:21:28,480 forward to getting this bag in me and hopefully having another five five and a half six months 181 00:21:28,480 --> 00:21:36,640 of like I say of stability that's the word I'm going to use I would use the word stability 182 00:21:36,640 --> 00:21:45,200 so fingers crossed in terms of numbness I'm going to say this and I'm touching wood as 183 00:21:45,200 --> 00:21:52,760 I speak the table I'm working on is a wooden table my hand is on it probably for about 184 00:21:52,760 --> 00:22:01,480 four days now I've been able to feel my right foot properly now that is something that hasn't 185 00:22:01,480 --> 00:22:08,400 happened in quite a few I'm going to go as strong as years I can genuinely feel my right 186 00:22:08,400 --> 00:22:14,280 foot if it gets touched or whatever else I can feel it and I'm going to be honest I love 187 00:22:14,280 --> 00:22:23,720 it I love it it's genuinely genuinely fantastic so yeah I've really got my fingers crossed 188 00:22:23,720 --> 00:22:29,080 on that one if I can get a little bit of feeling back in that foot okay yeah foot drop still 189 00:22:29,080 --> 00:22:39,540 there yeah whatever but I can feel the foot again it's just nothing but nothing but good 190 00:22:39,540 --> 00:22:45,560 nothing but positive unbelievable unbelievable but yeah that's where I'm going to leave it 191 00:22:45,560 --> 00:22:55,060 this week me talking about my foot a bit weird but you know is what it is absolutely superb 192 00:22:55,060 --> 00:23:04,680 honestly again hope this comes out as positive as I've I've tried it to be because that's 193 00:23:04,680 --> 00:23:11,640 where things need to go that's how things need to be for me personally I hope you all 194 00:23:11,640 --> 00:23:16,320 have a great week and I will look forward to talking to you all soon and let you know 195 00:23:16,320 --> 00:23:35,120 how the treatment went speak soon friends bye bye