WEBVTT 1 00:00:07.360 --> 00:00:12.344 Welcome to Inclusion Bites, your sanctuary for bold conversations 2 00:00:12.344 --> 00:00:17.241 that spark change. I'm Joanne Lockwood, your guide on this journey 3 00:00:17.241 --> 00:00:22.224 of exploration into the heart of inclusion, belonging and societal 4 00:00:22.224 --> 00:00:26.770 transformation. Ever wondered what it truly takes to create a 5 00:00:26.770 --> 00:00:30.354 world? Remember, everyone not only belongs, but 6 00:00:30.354 --> 00:00:34.726 thrives. You're not alone. Join me as we uncover the unseen, 7 00:00:34.726 --> 00:00:39.272 challenge the status quo and share stories that resonate deep 8 00:00:39.272 --> 00:00:44.200 within. Ready to dive in. Whether you're sipping your morning coffee or 9 00:00:44.200 --> 00:00:48.600 winding down after a long day, let's connect, reflect and 10 00:00:48.600 --> 00:00:53.190 inspire action together. Don't forget, you can be part of the 11 00:00:53.190 --> 00:00:55.190 conversation too. Reach out to 12 00:00:55.190 --> 00:00:59.830 jo.lockwood@seechangehappen.co.uk to share your 13 00:00:59.830 --> 00:01:04.790 insights or to join me on the show. So adjust your earbuds 14 00:01:04.790 --> 00:01:09.590 and settle in. It's time to ignite the spark of inclusion with 15 00:01:09.590 --> 00:01:10.830 Inclusion Bites. 16 00:01:15.150 --> 00:01:19.680 And today is episode 226 with the 17 00:01:19.680 --> 00:01:24.640 title Wellness Without Barriers. And I have the absolute honour and 18 00:01:24.640 --> 00:01:29.520 privilege to welcome Gemma Davies. Gemma is the founder of Wellness 19 00:01:29.520 --> 00:01:34.000 Without Barriers and she helps people living with chronic illness 20 00:01:34.000 --> 00:01:38.160 disability have fluctuating conditions to access gentler, 21 00:01:38.720 --> 00:01:43.400 more realistic and inclusive wellbeing support. When I asked Gemma to describe her 22 00:01:43.400 --> 00:01:47.990 sympath, she said that this is turning lived experience into connection 23 00:01:48.390 --> 00:01:51.790 and support for others. Hello, Gemma, welcome to the 24 00:01:51.790 --> 00:01:52.070 show. 25 00:01:52.870 --> 00:01:55.270 Hi, Jo, it's great to be here. Thank you for having me. 26 00:01:55.270 --> 00:01:59.430 Excellent. We were chatting away just now and I believe you're probably one of the closest 27 00:01:59.670 --> 00:02:02.910 geographically guests I've had on the podcast for some 28 00:02:02.910 --> 00:02:04.950 time. You're not far from me. Where are you based? 29 00:02:05.590 --> 00:02:07.270 I'm based in Wiltshire in the uk. 30 00:02:08.630 --> 00:02:10.230 Not far from Longley, apparently. 31 00:02:11.100 --> 00:02:13.020 No, it's literally just up the road from me. 32 00:02:13.900 --> 00:02:18.860 Yeah. If anyone listening to this somewhere else in the world, Longley is a big stately 33 00:02:18.860 --> 00:02:23.340 home and it's infamous for the lions of Longley. It's a big lion sanctuary, 34 00:02:23.420 --> 00:02:26.339 lion safari park. Is that still 35 00:02:26.339 --> 00:02:26.700 going? 36 00:02:27.500 --> 00:02:30.300 That is still going. It's absolutely beautiful here as well. 37 00:02:31.260 --> 00:02:35.060 It is, yeah. I remember it was a childhood 38 00:02:35.060 --> 00:02:40.030 holiday. Used to go there, I think several times in my. My younger days for day trips and things, 39 00:02:40.910 --> 00:02:45.670 I guess. It's a big draw. It's no theme wise, I just don't want 40 00:02:45.670 --> 00:02:47.150 to. Adventure is. It's. It's more. 41 00:02:47.230 --> 00:02:48.750 It's an amazing place to go to. 42 00:02:49.630 --> 00:02:54.287 Yeah. You, you founded this, your organisation, Wellness Without 43 00:02:54.287 --> 00:02:58.527 Barriers, recently or not so long ago. Tell us the story about 44 00:02:58.527 --> 00:03:00.190 how. How it came to pass. 45 00:03:00.270 --> 00:03:04.830 Well, actually, Jo, it's come from lived experience. So five years ago 46 00:03:05.470 --> 00:03:10.110 I had a stroke, like episode and I was rushed into hospital with a 47 00:03:10.110 --> 00:03:14.030 fast ambulance and I lost eight hours that day. So I was taken 48 00:03:14.030 --> 00:03:18.870 in. I had loads of tests done, MRIs, CT scans, bloods, ECGs, 49 00:03:18.870 --> 00:03:23.550 and everything came back normal. All I remember of that day is waking up in 50 00:03:23.550 --> 00:03:28.190 hospital and there was a physiotherapist in front of me, along with my partner, 51 00:03:28.350 --> 00:03:32.870 who I didn't know was my partner at the time. I'd lost all my memory and I was given a 52 00:03:32.870 --> 00:03:37.220 leaflet on something that was called fnd, which is functional 53 00:03:37.370 --> 00:03:42.330 neurological disorder. And I was sent home. I was not able to walk, I was not able to 54 00:03:42.330 --> 00:03:47.050 talk. Me and my partner were just sent on our way to be told that we might have 55 00:03:47.050 --> 00:03:50.290 fnd, which is sad state of affairs for the healthcare 56 00:03:50.290 --> 00:03:54.090 system. But I've learned since then that FND is not widely 57 00:03:54.090 --> 00:03:58.890 known. So my own experience within the healthcare system allowed me to 58 00:03:58.890 --> 00:04:03.610 realise that wellness is not exactly accessible for all disabled 59 00:04:03.610 --> 00:04:07.650 people or chronically ill people. And that's where wellness without barriers has come 60 00:04:07.650 --> 00:04:07.890 from. 61 00:04:07.890 --> 00:04:11.960 So let me just ask you some questions about that because what's going through my head 62 00:04:11.960 --> 00:04:16.760 is. So you're in hospital, you're struggling to remember who 63 00:04:16.760 --> 00:04:21.400 you are or any, any, any significant facts around your near relationships, anything like 64 00:04:21.400 --> 00:04:26.240 that. You're barely able to walk, talk and 65 00:04:26.240 --> 00:04:30.760 function as a, as you were before, and they're, they're sending you 66 00:04:30.760 --> 00:04:35.090 home. Did they send you home a care package or any support or is this 67 00:04:35.090 --> 00:04:38.890 literally. Nope, just a bed. Just a 68 00:04:38.890 --> 00:04:39.450 leaflet. 69 00:04:40.010 --> 00:04:44.890 Yep, just a leaflet, provided my partner with a wheelchair and that was 70 00:04:44.890 --> 00:04:45.850 it, I went home. 71 00:04:45.850 --> 00:04:49.930 Wow. No. A GP referral, a follow up appointment, 72 00:04:50.170 --> 00:04:50.730 anything? 73 00:04:50.730 --> 00:04:55.650 No, no. I had to chase that myself. Well, my partner did, he did the majority 74 00:04:55.650 --> 00:04:59.610 of it. For the first two years we chased at the GP and got an appointment with a 75 00:04:59.610 --> 00:05:00.330 neurologist. 76 00:05:00.330 --> 00:05:01.530 That must have been quite scary. 77 00:05:02.510 --> 00:05:03.790 It was, it was very scary. 78 00:05:04.750 --> 00:05:09.630 My experience of the hospital environment and that, I think what you're talking about here is this 79 00:05:10.110 --> 00:05:14.830 gap between fixing you physically and 80 00:05:14.830 --> 00:05:19.230 fixing you holistically was by my mother in law before she passed 81 00:05:19.230 --> 00:05:24.070 away. She was clearly not well. She had a lack of well 82 00:05:24.070 --> 00:05:26.910 being, but physically she was 83 00:05:26.910 --> 00:05:31.630 okay. So they're almost saying, well, the hospital, the bed is there to treat you 84 00:05:31.630 --> 00:05:36.350 physically, not holistically. And it's a real frustration that you could be in a 85 00:05:36.350 --> 00:05:41.310 situation where clearly you need support, but there's nothing to hand you over 86 00:05:41.310 --> 00:05:41.590 to. 87 00:05:41.750 --> 00:05:46.190 There is a big gap there. And that became very apparent very quickly to my partner and my 88 00:05:46.190 --> 00:05:49.270 family. So we had to reach out ourselves and do everything 89 00:05:49.270 --> 00:05:53.750 ourselves. My partner spent hours and hours researching functional neurological 90 00:05:53.750 --> 00:05:58.600 disorder whilst I was led next to him having seizures and not being able 91 00:05:58.600 --> 00:06:01.320 to speak and not being able to move. It was very 92 00:06:01.320 --> 00:06:01.720 scary. 93 00:06:01.880 --> 00:06:04.600 So how was your partner feeling at this 94 00:06:04.600 --> 00:06:07.160 stage? They must have been quite worried about you. 95 00:06:07.800 --> 00:06:12.680 He was, he was extremely worried, extremely frustrated and I think he was 96 00:06:12.680 --> 00:06:17.160 a little bit overwhelmed with having to deal with everything and having to go from, 97 00:06:17.400 --> 00:06:20.800 you know, being at work himself to almost being a full time 98 00:06:20.800 --> 00:06:25.160 carer. He had to take a lot of leave to look after me and he also tried to 99 00:06:25.560 --> 00:06:30.540 hide it as best he could from my daughters so that they didn't actually see any of the seizures or 100 00:06:30.540 --> 00:06:35.260 anything like that, as well as running a household. And he had his own medical issues as 101 00:06:35.260 --> 00:06:39.500 well that he was also dealing with. So I think he was a little bit overwhelmed with 102 00:06:39.500 --> 00:06:42.339 everything. But he powered on as he always 103 00:06:42.339 --> 00:06:47.140 does. And I wouldn't know as much about FND now if he hadn't 104 00:06:47.300 --> 00:06:49.940 been able to do that, all that research and everything 105 00:06:49.940 --> 00:06:50.460 himself. 106 00:06:50.460 --> 00:06:52.260 Does it remind me what FND stands for again? 107 00:06:52.260 --> 00:06:55.300 You said it earlier, it's Functional Neurological 108 00:06:55.300 --> 00:06:56.020 disorder. 109 00:06:56.100 --> 00:07:00.530 And it's a purely neurological. There's no physicality, you're 110 00:07:00.530 --> 00:07:04.010 not. Nothing's broken as such. It's just 111 00:07:04.010 --> 00:07:06.770 a. That the fuse is blown. Is it? Or something like that. 112 00:07:06.770 --> 00:07:09.799 Yeah. So how they describe it is a hardware 113 00:07:09.799 --> 00:07:12.740 issue. So it's almost like your computer 114 00:07:12.740 --> 00:07:17.414 rebooting. So if you have an issue, a virus on your computer and it 115 00:07:17.414 --> 00:07:21.483 completely shuts down and it reboots, not everything is 116 00:07:21.483 --> 00:07:25.897 reconnected properly. So your brain fails to send signals to 117 00:07:25.897 --> 00:07:29.359 certain parts of your body or it, it becomes very 118 00:07:29.359 --> 00:07:31.956 sensit. That would normally not be a 119 00:07:31.956 --> 00:07:34.206 bother. Things actually are so 120 00:07:34.206 --> 00:07:38.878 oversensitized. So like your flight or fight modes, things like 121 00:07:38.878 --> 00:07:43.467 that, they are over sensitised and you can become, your body can 122 00:07:43.467 --> 00:07:48.314 become overwhelmed very quickly and then it has an outlay and it can 123 00:07:48.314 --> 00:07:52.382 be in the form of ticks, twitches, seizures, paralysis, 124 00:07:52.382 --> 00:07:57.230 blackouts. It can even be headaches, sleep disorders, things like 125 00:07:57.230 --> 00:08:02.078 that. And that's why FND is such an big umbrella of a diagnosis, that 126 00:08:02.078 --> 00:08:06.667 there's so much that comes under that. I believe they've now put 127 00:08:06.667 --> 00:08:10.649 fibromyalgia under FND. So yeah, it's, it's, it's very 128 00:08:10.649 --> 00:08:15.411 widely. It's a big diagnosis. There's a lot of varieties that come 129 00:08:15.411 --> 00:08:16.100 under it. 130 00:08:16.100 --> 00:08:18.340 So Tourette's maybe with tics? 131 00:08:18.340 --> 00:08:21.500 Yes, yep, that's, that's a 132 00:08:21.500 --> 00:08:26.340 consideration. Even Parkinson's. So people that have tremors or handshakes, 133 00:08:26.420 --> 00:08:31.310 feet shakes. I've known people be wheelchair bound, paralysed 134 00:08:31.550 --> 00:08:36.110 because of it, and it can start at any age. We've recently had 135 00:08:36.350 --> 00:08:41.270 a young lady who we've learned about in an FND group that I 136 00:08:41.270 --> 00:08:44.590 go to. She's 10 years old and she's just been 137 00:08:44.590 --> 00:08:45.310 diagnosed. 138 00:08:45.390 --> 00:08:49.950 Yeah, well, so I'm gonna make an assumption here, because we're having this conversation that 139 00:08:50.270 --> 00:08:54.670 you have improved slightly since that initial hospitalisation 140 00:08:54.990 --> 00:08:59.820 and you've. Are you still improving or have you kind of plateaued or how are you on 141 00:08:59.820 --> 00:09:00.780 your journey? 142 00:09:01.340 --> 00:09:06.300 I'm still learning every day about things that happen and as it 143 00:09:06.300 --> 00:09:09.740 progresses, for me, it's new symptoms seem to come 144 00:09:09.740 --> 00:09:14.380 out. So I've gone from having seizures, extreme 145 00:09:14.380 --> 00:09:19.300 fatigue, and when I get extremely tired, my speech slurs and then I'm not able 146 00:09:19.300 --> 00:09:23.700 to walk properly, my feet turn in, both pointing towards each other, so it's very hard to 147 00:09:23.700 --> 00:09:28.640 walk. 2. Having blackouts. I had a blackout behind the wheel of my car, crashed my 148 00:09:28.640 --> 00:09:33.560 car, lost my driving licence. But I've learned over the last five years since this 149 00:09:33.560 --> 00:09:38.000 happened, how to try and. How can I put 150 00:09:38.000 --> 00:09:42.280 it? Not. Not stop, but maintain a healthy 151 00:09:42.760 --> 00:09:47.560 lifestyle. As I'm going, I know my limits. I listen to my body and when my body 152 00:09:47.560 --> 00:09:52.120 starts telling me that I'm getting a little bit fatigued or it's too much, it's too 153 00:09:52.120 --> 00:09:56.760 overwhelming, it sends little signals and. But I'm still progressing every 154 00:09:56.760 --> 00:10:01.480 day. I have good days and I have bad days. I'm quite lucky that today's a good day, but 155 00:10:02.280 --> 00:10:06.960 because of being interviewed for only the second time in my life, I'll probably be 156 00:10:06.960 --> 00:10:10.200 overwhelmed after this and I'll probably have to sleep for a few 157 00:10:10.200 --> 00:10:14.600 hours. So, yeah, it can differ every day, but my journey is still ongoing 158 00:10:15.000 --> 00:10:19.840 and because of that, I feel that I'm a good person to be running wellness without 159 00:10:19.840 --> 00:10:22.720 barriers and helping others because of my lived 160 00:10:22.720 --> 00:10:24.840 experience. That's currently still going. 161 00:10:25.100 --> 00:10:29.220 So is your. I'm going to say the word condition. Condition's the right word, I 162 00:10:29.220 --> 00:10:33.340 hope. Is your condition recognised as a disability under the Equality 163 00:10:33.340 --> 00:10:37.820 Act? Do you have social. Social support in terms of disability 164 00:10:37.820 --> 00:10:41.780 benefits, those sort of things, or are you being literally told to get on with 165 00:10:41.780 --> 00:10:42.060 life? 166 00:10:43.020 --> 00:10:46.860 It is known. It is a formal disability that's under the Disabilities 167 00:10:47.020 --> 00:10:51.180 Act. It is now. It wasn't a few years ago and I do get support 168 00:10:51.340 --> 00:10:56.020 from. From the government as such. Some people are having issues with 169 00:10:56.020 --> 00:11:00.740 regards to PIP and Disability Living Allowance, but I'm quite lucky in 170 00:11:00.900 --> 00:11:05.740 my own circumstances that I get that support. And I've had such great support 171 00:11:05.740 --> 00:11:10.700 from my local job centre in Trowbridge. There's a lady who I work with there who has 172 00:11:10.700 --> 00:11:15.140 been an absolute superstar. She's helped me build my business and she's even 173 00:11:15.140 --> 00:11:19.580 included me on their internal Internet as a 174 00:11:19.580 --> 00:11:24.190 disabled entrepreneur who's working within my life and 175 00:11:24.510 --> 00:11:27.470 she's been there every step of the way. So there is support out 176 00:11:27.470 --> 00:11:31.070 there. You've just got to really know where to look and I can help with 177 00:11:31.070 --> 00:11:34.430 that. You know, as someone that's been through it, that's where I 178 00:11:34.430 --> 00:11:38.630 stand. I can help people with advice, where to go and things like 179 00:11:38.630 --> 00:11:38.910 that. 180 00:11:38.910 --> 00:11:43.830 Are there research projects underway or studies to look into this 181 00:11:43.830 --> 00:11:47.710 in more detail, or are you kind of in this sort of vacuum where nothing's really 182 00:11:47.710 --> 00:11:48.190 happening? 183 00:11:49.560 --> 00:11:52.340 I believe they're doing some research on MRI 184 00:11:52.340 --> 00:11:57.150 scans. It turns out that there are actual differences between somebody that 185 00:11:57.150 --> 00:12:00.005 has. Is normal, let's say normal as normal can 186 00:12:00.005 --> 00:12:04.964 be. To somebody who has been diagnosed with FND, there are slight neurological 187 00:12:04.964 --> 00:12:09.774 changes within the brain that they have noticed, but it's not something that 188 00:12:09.774 --> 00:12:14.658 they really look out for. So if you go in presenting with stroke symptoms like I 189 00:12:14.658 --> 00:12:19.393 did, they would look for the normal signs of a blood clot within the brain or a 190 00:12:19.393 --> 00:12:24.053 bleed or something like that. So they don't really look for these specific 191 00:12:24.053 --> 00:12:28.561 changes. But I do know there's research going on around making training 192 00:12:28.561 --> 00:12:33.445 available for neurologists or radiologists to have a look for those specific 193 00:12:33.445 --> 00:12:36.526 changes. They're very, very small, but there are 194 00:12:36.526 --> 00:12:41.485 changes. I don't know how far they are with that, but I read an article on that not 195 00:12:41.485 --> 00:12:46.293 long ago and there's plenty of people out there who are doing apps that you can 196 00:12:46.293 --> 00:12:50.952 log all your symptoms with and it's used for research and things like that, 197 00:12:50.952 --> 00:12:54.032 which are really, really helpful. I use one every 198 00:12:54.032 --> 00:12:57.564 day. It's called NeuroLog by a gentleman called Stephen 199 00:12:57.564 --> 00:13:02.446 Painter. He has FND himself and he created Neurolog using his own conditions, 200 00:13:02.446 --> 00:13:07.327 his own symptoms. So there are things that are out there, but because FND is not 201 00:13:07.327 --> 00:13:10.634 widely known, there's not many people that are aware 202 00:13:10.634 --> 00:13:10.859 of. 203 00:13:10.860 --> 00:13:15.630 So whilst they don't know much about it, is there any 204 00:13:16.990 --> 00:13:20.470 kind of conjecture on the cause? Was it a mini 205 00:13:20.470 --> 00:13:23.230 stroke? Was it a virus? Was it just one of those 206 00:13:23.230 --> 00:13:27.310 things? I mean, do they have any kind of what they think is the likely 207 00:13:27.550 --> 00:13:28.190 trigger? 208 00:13:29.710 --> 00:13:32.813 So when I was first diagnosed, they put it down to 209 00:13:32.813 --> 00:13:37.623 stress. So I was under a lot of pressure in my job, in my Home life with things 210 00:13:37.623 --> 00:13:41.424 going on and it just got to the stage where my brain just gave 211 00:13:41.424 --> 00:13:46.391 in. But now they've realised that it can be a source of trauma they're putting 212 00:13:46.391 --> 00:13:51.124 it down to. It can either be something that happened to you years and years 213 00:13:51.124 --> 00:13:54.149 ago, or it can be something that happened quite 214 00:13:54.149 --> 00:13:58.728 recently. It's not necessarily just a stress related issue or a mental 215 00:13:58.728 --> 00:14:03.617 health issue. It can be from a fall. For example, if you fell over and hit your 216 00:14:03.617 --> 00:14:06.566 head, that can be a massive starting point for 217 00:14:06.566 --> 00:14:11.452 FND. They basically put it down to your brain's just had enough and it's just 218 00:14:11.452 --> 00:14:16.417 gone, no, no more. It completely down. And as it's rebooting, you kind of have 219 00:14:16.417 --> 00:14:18.357 to teach it using. It's called 220 00:14:18.357 --> 00:14:23.245 neuroplasticity. So you're kind of working with your nervous system to try 221 00:14:23.245 --> 00:14:27.978 and make the brain remember how to deal with your flight or fight modes and 222 00:14:27.978 --> 00:14:32.400 things like that. Just to train it again to try and get some normality 223 00:14:32.400 --> 00:14:37.365 back. And it doesn't work for everybody. Talking therapies as well, they use 224 00:14:37.365 --> 00:14:42.253 that a bit of cbt. Again, it depends on people's symptoms because everybody 225 00:14:42.253 --> 00:14:46.986 presents differently. I mean, whereas I presented with what looked like 226 00:14:46.986 --> 00:14:51.798 stroke symptoms, somebody can probably fall out of their chair, hit their 227 00:14:51.798 --> 00:14:54.202 head and they present with different 228 00:14:54.202 --> 00:14:59.168 symptoms. Unfortunately, within the healthcare setting, because it's not 229 00:14:59.168 --> 00:15:03.512 widely known, when doctors do find out that you have something like 230 00:15:03.512 --> 00:15:07.935 functional neurological disorder, unfortunately they try and put 231 00:15:07.935 --> 00:15:12.513 everything underneath that umbrella, blame it on the FND every single 232 00:15:12.513 --> 00:15:15.927 time. But that's just because of lack of education, I 233 00:15:15.927 --> 00:15:16.548 believe. 234 00:15:16.720 --> 00:15:21.076 So this is now a lifelong, I'm trying to think of the right word to use a 235 00:15:21.076 --> 00:15:25.815 condition, a lifelong situation which you've had to come to terms over the 236 00:15:25.815 --> 00:15:30.785 last five years going through, I would have thought, your own mental health as 237 00:15:30.785 --> 00:15:35.525 well as the fnd. Your mental health journey has been quite a struggle to get 238 00:15:35.525 --> 00:15:37.130 grips with as well as has. 239 00:15:37.370 --> 00:15:42.308 It has been very hard. It's almost like accepting that you have a disability when you 240 00:15:42.308 --> 00:15:44.989 were perfectly healthy beforehand. It can be 241 00:15:44.989 --> 00:15:49.928 difficult. I go through good days and bad days trying to remember the person who I was 242 00:15:49.928 --> 00:15:54.797 compared to the person I am now is very, very hard. And it's taken a long time for me to 243 00:15:54.797 --> 00:15:57.830 even accept the fact that I am a registered disabled 244 00:15:57.830 --> 00:16:01.146 person. And I know some people would probably criticise 245 00:16:01.146 --> 00:16:05.308 that. But I myself personally have always seen myself as a fit, healthy 246 00:16:05.308 --> 00:16:09.543 person. And because I was practically bedridden for two years, I gained 247 00:16:09.543 --> 00:16:13.634 weight. And that was something else that really messed with my mental 248 00:16:13.634 --> 00:16:17.656 health. When I sought help for that. I was told to just join a slimming 249 00:16:17.656 --> 00:16:22.029 club. Even though I couldn't do half of the things that they do at a slimming 250 00:16:22.029 --> 00:16:25.487 club. Getting there and being surrounded by people was bad 251 00:16:25.487 --> 00:16:30.425 enough. With the anxiety side of things, I've got better with the help of my partner, 252 00:16:30.425 --> 00:16:35.292 who's very understanding. My two daughters, they're very understanding and they 253 00:16:35.292 --> 00:16:39.173 listen all the time. Even if they have no advice. I know I can talk to 254 00:16:39.173 --> 00:16:43.690 them. And it just, it sounds silly, but kind of goes through one ear and out the 255 00:16:43.690 --> 00:16:48.134 other. They don't have an opinion, they don't try and fix it or anything like 256 00:16:48.134 --> 00:16:51.379 that. They just listen. And that's what's needed for me 257 00:16:51.379 --> 00:16:56.178 sometimes. It's been a tough road, but I've come out on the other end and I want to be 258 00:16:56.178 --> 00:16:57.890 that person for other people. 259 00:16:59.410 --> 00:17:04.370 So it really wasn't literally a case of on Tuesday morning 260 00:17:04.610 --> 00:17:09.000 you were getting on with life and by Tuesday evening everything had 261 00:17:09.000 --> 00:17:09.440 changed. 262 00:17:10.000 --> 00:17:14.760 Yep, absolutely. And my whole life was turned upside down and my whole family's life was 263 00:17:14.760 --> 00:17:19.040 turned upside down. It was a massive shock and it was extremely 264 00:17:19.040 --> 00:17:23.880 scary. And it's not something that I would want anybody to go through or do on 265 00:17:23.880 --> 00:17:26.160 their own. Definitely not. 266 00:17:26.160 --> 00:17:29.600 You must have feelings of. It's not fair. Why 267 00:17:29.600 --> 00:17:29.920 me? 268 00:17:30.000 --> 00:17:32.480 Yes. Yeah, I do all the time. 269 00:17:32.480 --> 00:17:36.920 But I guess by starting the business, becoming, you know, putting yourself into 270 00:17:37.480 --> 00:17:41.560 supporting others, it's. It's a very cathartic way of, of 271 00:17:42.760 --> 00:17:46.920 dealing with things because you're, you're dealing with yourself, but you're not focusing on yourself, you're focusing on 272 00:17:46.920 --> 00:17:51.800 others. It allows you to heal yourself differently, doesn't it, without being sort 273 00:17:51.800 --> 00:17:53.640 of self focused? 274 00:17:54.280 --> 00:17:59.000 Yes, it does. And I actually find that some of the advice I give some of my clients as well 275 00:17:59.000 --> 00:18:03.050 is I sit there and think maybe I need to take that advice 276 00:18:03.050 --> 00:18:07.730 myself. I can help people all the time, but to take my own 277 00:18:07.730 --> 00:18:12.570 advice can be difficult. But there are times where it's a big eye opener 278 00:18:12.570 --> 00:18:17.370 and it gives me a lot of satisfaction knowing that there's support out there for 279 00:18:17.370 --> 00:18:21.850 somebody that really needs it. And I'm glad it's 280 00:18:21.850 --> 00:18:25.610 me. And I couldn't wish for a better business, to be 281 00:18:25.610 --> 00:18:25.970 honest. 282 00:18:27.350 --> 00:18:32.310 Yeah. Are there people out there like you helping 283 00:18:32.310 --> 00:18:36.590 people like you that help you, if that makes sense. So you, you're part of a chain of 284 00:18:36.590 --> 00:18:39.190 people. So you're not on your own through this network as well? 285 00:18:39.910 --> 00:18:42.563 Yes, I am. There's quite a few people that I'm 286 00:18:42.563 --> 00:18:47.366 with. I'm actually a Trusted partner for a company called Ablepreneurs, so they 287 00:18:47.366 --> 00:18:49.874 help disabled entrepreneurs build their 288 00:18:49.874 --> 00:18:54.605 business. I'm also a volunteer and I've just been accepted as partnership for a 289 00:18:54.605 --> 00:18:59.549 group called FND Friends. They're in the southwest of the uk, so I'll be partnering 290 00:18:59.549 --> 00:19:02.918 with them and being able to give their community help and 291 00:19:02.918 --> 00:19:07.720 support. But I also have my own therapy as such, so I have my own talking therapy, I 292 00:19:07.720 --> 00:19:12.594 have my own physiotherapy. I have a lot of people looking after me now, but I've had 293 00:19:12.594 --> 00:19:16.822 to work hard to get those people, which is what I don't want for somebody 294 00:19:16.822 --> 00:19:17.170 else. 295 00:19:21.410 --> 00:19:25.980 You talked about physiotherapy, so part of it is keeping your muscles 296 00:19:25.980 --> 00:19:29.460 active, dealing, as you mentioned, your feet point together 297 00:19:29.460 --> 00:19:32.780 sometimes. It's recognising that and trying to keep yourself physically 298 00:19:33.100 --> 00:19:37.220 active. You know, the use it or lose it mentality really, isn't 299 00:19:37.220 --> 00:19:38.860 it? You've got to keep doing things. 300 00:19:39.660 --> 00:19:43.860 Yeah, absolutely. And it's also about teaching your brain muscle memory and things like 301 00:19:43.860 --> 00:19:47.860 that. Distraction techniques are really, really good, especially if you feel like 302 00:19:47.860 --> 00:19:52.840 you're. If you're like me and you get a symptom before a seizure's coming on, you 303 00:19:52.840 --> 00:19:57.400 do what I call grounding techniques. So you can look around, you can see colours, 304 00:19:57.400 --> 00:20:02.320 numbers and just say what you see, hear, feel, smell, things like 305 00:20:02.320 --> 00:20:07.040 that, because it distracts you. Physiotherapy for me has been very hard, 306 00:20:07.040 --> 00:20:11.960 especially when my feet turn in because it's almost like I'm heading back to where 307 00:20:11.960 --> 00:20:16.840 I was when it first happened five years ago. And trying to manipulate my feet 308 00:20:16.840 --> 00:20:19.560 back round to where they should be can sometimes take 309 00:20:19.560 --> 00:20:24.420 weeks. I think I've only had one episode where they turn back to normal the day 310 00:20:24.420 --> 00:20:28.700 after and I was really, really happy because that never happened 311 00:20:28.700 --> 00:20:31.700 before. But it's small wins, small changes every 312 00:20:31.700 --> 00:20:36.620 day. And that's what my physios taught me. Muscle memory is, is key for 313 00:20:36.620 --> 00:20:39.540 trying to get your limbs working like they should 314 00:20:39.540 --> 00:20:43.820 be. But that has been the hardest for me is getting my limbs to do 315 00:20:43.820 --> 00:20:44.060 that. 316 00:20:44.060 --> 00:20:48.260 Do you. Do you get an inkling that today is going to be a bad day type 317 00:20:48.260 --> 00:20:53.230 thing? You think, yeah, I just need to prepare myself for a bad day or a bad 318 00:20:53.230 --> 00:20:53.550 week. 319 00:20:54.270 --> 00:20:58.590 Yes. My inkling is a heavy head. When I wake up, I could have 320 00:20:58.910 --> 00:21:01.950 eight, nine, ten hours sleep and I'll only feel like I've had 321 00:21:01.950 --> 00:21:06.229 two. And that for me is huge. I suffer quite bad with 322 00:21:06.229 --> 00:21:10.830 migraine. Not just last week. I spent four days in a dark room 323 00:21:10.910 --> 00:21:15.790 because I Just had a horrific headache, but I didn't know that 324 00:21:15.790 --> 00:21:19.830 headache was coming on. But normally I get a heavy head when I wake 325 00:21:19.830 --> 00:21:24.250 up. If I feel like I haven't had any sleep, sleep. I'm like, right, okay, today's a low 326 00:21:24.250 --> 00:21:28.930 day. We're gonna keep it minimal. But that's because I've been taught to listen to my 327 00:21:28.930 --> 00:21:29.210 body. 328 00:21:30.410 --> 00:21:35.210 Yeah, the only sort of relative experience I can give you on that 329 00:21:35.210 --> 00:21:39.650 is that I had issues. My gallbladder, probably about six, seven years 330 00:21:39.650 --> 00:21:44.330 ago. Actually, no, it's early Covid and I used to get these really bad attacks 331 00:21:44.730 --> 00:21:47.770 where I'd be on my hands and knees throwing up in the 332 00:21:47.770 --> 00:21:52.640 toilet. And I get an inkling about 20 minutes before and all of a 333 00:21:52.640 --> 00:21:57.400 sudden I think it's going to be one of those situations and you get this crescendo of 334 00:21:57.400 --> 00:22:02.280 pain. Arm going numb and you get pains and then it's shot down 335 00:22:02.280 --> 00:22:05.840 your arms. And I'd be on my hands and knees, I'd end up being sick into the 336 00:22:05.840 --> 00:22:09.320 toilet. And all of a sudden it cleared and then I was back to normal 337 00:22:09.320 --> 00:22:14.080 again. And it was a really strange thing. So I was so glad to have my gallbladder out when it, 338 00:22:14.160 --> 00:22:19.110 when they took it out. It was instant relief. But yeah, I had probably two or three years 339 00:22:19.510 --> 00:22:23.750 of this randomness of debilitating pain in my chest 340 00:22:24.230 --> 00:22:27.590 that always led me to throw up. I couldn't not throw up if you 341 00:22:27.590 --> 00:22:32.390 like. So, yeah, I kind of get that feeling. And I still suffer now from quite 342 00:22:32.470 --> 00:22:37.270 bad acid, acid reflux, where I can be just getting on with life all of 343 00:22:37.270 --> 00:22:42.080 suddenly go, oh, in five minutes time, I'm going to end up this real bad 344 00:22:42.080 --> 00:22:46.480 pain in my chest. And yet sure enough, it comes and then it'll 345 00:22:46.480 --> 00:22:51.400 pass. But then you get this ptsd, this post event sort of 346 00:22:51.400 --> 00:22:55.200 pain where the trauma makes you feel really for five, six hours 347 00:22:55.200 --> 00:22:58.080 maybe. But that's obviously nowhere near as bad as what you're 348 00:22:58.080 --> 00:22:59.600 experiencing. But I kind of get that. 349 00:23:00.640 --> 00:23:04.400 No, but that's your body talking to you. That is your body talking to 350 00:23:04.400 --> 00:23:08.720 you. The fact that you knew that before it was going to happen, that's your body sending you that 351 00:23:08.720 --> 00:23:11.130 signal. You've just got to learn to listen. 352 00:23:12.090 --> 00:23:16.346 Yeah. And I share your frustration that the medical professionals 353 00:23:16.346 --> 00:23:21.210 just. They give you an mri, they give you a ct, they give you this, they give you 354 00:23:21.210 --> 00:23:26.074 that, you do the barium swallow, you go through their thing and they go, yeah, 355 00:23:26.074 --> 00:23:30.178 well, just have to live with it. You go, well, yeah, yeah, really, 356 00:23:30.178 --> 00:23:33.370 that. Take some Gaviscon and hope for the best. And 357 00:23:33.370 --> 00:23:38.082 it's. That's the frustration when you realise you're now living with this 358 00:23:38.082 --> 00:23:41.426 persistent randomness that can hit you at a moment's 359 00:23:41.426 --> 00:23:41.958 notice. 360 00:23:42.530 --> 00:23:45.930 Yes, absolutely. And that's really scary to go through life like 361 00:23:45.930 --> 00:23:46.170 that. 362 00:23:46.170 --> 00:23:50.650 Yeah. And I think once you. Once you understand the pattern, it's not so 363 00:23:50.650 --> 00:23:55.410 bad. I think the first few weeks of it, you. You try and you're 364 00:23:55.410 --> 00:23:59.130 desperately thinking, was it something I ate, Was it the way I was sitting, was it the time of 365 00:23:59.130 --> 00:24:02.370 day? And you. All these permutations go in your head and there's 366 00:24:02.450 --> 00:24:06.090 actually. There is no correlation here. It just 367 00:24:06.090 --> 00:24:06.650 happened. 368 00:24:07.290 --> 00:24:10.410 Yeah, absolutely. And it's so 369 00:24:10.410 --> 00:24:10.810 scary. 370 00:24:11.930 --> 00:24:16.650 Yeah. So you're living in a world and people talk about 371 00:24:16.650 --> 00:24:21.210 the social model of disability versus the medical model. You must have come across 372 00:24:21.370 --> 00:24:24.770 a lot of society where you are not the 373 00:24:24.770 --> 00:24:29.450 problem. It's the environment, it's the service provider, it's the way that you're not 374 00:24:29.450 --> 00:24:34.370 catered for. It's the issue what, what things that kind of surprised you the most with that difficult 375 00:24:34.370 --> 00:24:34.730 one. 376 00:24:36.250 --> 00:24:40.981 So because of my symptoms are not day to day, they're not the same every 377 00:24:40.981 --> 00:24:44.405 day. I can. Let's say, example, I've been on hikes, 378 00:24:44.405 --> 00:24:49.054 okay. I'm. I'm able, when I'm having good days, to do the things that I 379 00:24:49.054 --> 00:24:54.031 enjoy that I used to do. So I go on hikes with my partner and we climb the Pen y 380 00:24:54.031 --> 00:24:58.354 Fan in Wales. And it's not a massively high mountain, let's say, 381 00:24:58.354 --> 00:25:03.166 technically, if I was a whale person, it probably would have taken me an 382 00:25:03.166 --> 00:25:08.142 hour, but it took me nearly three hours to do it, so I was up and back down and 383 00:25:08.142 --> 00:25:12.952 I put it on social media. My achievement, because I've always wanted to 384 00:25:12.952 --> 00:25:16.870 climb the Pen y Fan, always. And I got a lot of criticism for 385 00:25:16.870 --> 00:25:20.870 it. I got a lot of. But you don't look sick. I thought you were 386 00:25:20.870 --> 00:25:25.031 poorly. I thought you couldn't walk. You know, a lot of people 387 00:25:25.031 --> 00:25:30.007 criticising the fact that I had done it. What they didn't see was the three 388 00:25:30.007 --> 00:25:34.816 days afterwards of me recovering in bed. Constant tiredness, my bones 389 00:25:34.816 --> 00:25:39.628 aching, all of my joints aching, my feet turning in, unbelievably, not 390 00:25:39.628 --> 00:25:43.543 being able to walk, just the struggle for three solid days 391 00:25:43.543 --> 00:25:48.438 afterwards. So, I mean, the phrase you don't look sick comes up a hell of a 392 00:25:48.438 --> 00:25:50.968 lot for me. I deal with that a lot in the 393 00:25:50.968 --> 00:25:55.699 public. I have my sunflower lanyard. Just the other day on the train, I 394 00:25:55.699 --> 00:26:00.430 scanned my ticket and the gentleman on there was, oh, I need to See your 395 00:26:00.430 --> 00:26:05.404 disabled rail card? So I showed it to him and he just looked at me up and down 396 00:26:05.404 --> 00:26:08.422 and he was like, right, okay, and just walked 397 00:26:08.422 --> 00:26:13.153 away. So it differs. You can get some good receptives, you can get some 398 00:26:13.153 --> 00:26:18.127 bad, but you've just got to remain calm in it all the time and just remember 399 00:26:18.127 --> 00:26:21.551 that they're not seeing what goes on behind closed 400 00:26:21.551 --> 00:26:24.732 doors. I don't look sick. I don't look sick even 401 00:26:24.732 --> 00:26:29.625