May 12, 2020
Enabled warriors, welcome to another edition of the special Coronavirus
episodes. We are here today
with Natalie Wilson and her episode will be coming out really really soon. So Natalie is a fundraising gal. Natalie works for EDS UK and wanted to have a bit of a chat about how the Coronavirus is affecting charities and in particular support groups. So hey, hey, Natalie, how you doing today?
Yeah, very well. Thank you. Awesome. So
let's have a quick chat about how you think COVID is affecting the sort of face to face meetups that you would normally have had with EDS patients.
Yeah, definitely. So I mean, part of a big part of a charity and what we do is support you know, everyone in the local communities with Ehlers danlos Syndrome, and we have a network across the K and of volunteers that run kind of physical support group meetings and As well as working on the fundraising manager for charity, but as well as working for the charity, I've also always volunteered to run my local support groups. I did this a long time before I started working for charity. And so I've always run physical support groups, and quite Luckily, about six months ago, and because of the nature of the condition, and the charity started running a few online and it was very much meant to be kind of a trial, you know, try get everything working, yeah, see if they work and that, you know, only started at the beginning of this year. And, and obviously, you know, since kind of all of the lockdown and kind of social isolation, isolation of them COVID all of the physical support groups have had to stop and and, you know, over These a lot of people in our community, sometimes the only time they come out for houses is to come to the support group meetings, you know, it's a big thing for them. And, and luckily, we've managed to move a lot of our support group meetings online. And I and it's funny funny, we're talking about this today because I ran my first local one last night. And the charity has been doing a lot of kind of more national things. So we've been having things like puzzle clubs and book clubs. Again, we've got a session every week that anyone can come and chat about their anxieties. But yeah, so coffee. So a lot of areas are having things like coffee mornings and things like that. And so I had I have my first proper meeting, you know, last night and it was good. We've talked a lot about kind of worries. And and it's very much you know, Normal support group meeting would be to talk about the problems with your conditions and you know where you can get help. And does anyone have any advice for me doing this, this and this but last night, it was very much that mixed with kind of COVID anxieties, and I think it hit God Of course, it's hit everyone really hard. It's hit, you know, lots of communities but for people with Ehlers danlos Syndrome, you know, a lot of people are seeing physios regularly and they're having help with massage regularly and you know, any anything that they're kind of doing is very much often supported by other people helping them in daily life. And, you know, cleaners and carers although care is obviously still still very much helping and, and our chat last night, kind of moved on to how can people start doing things themselves. You know, and a lot of people are having online meetings though zoom calls is kind of what we've been using to charity with their local physio, and to help them with new exercises or what exercises they should be doing now. And a lot of people last night in my meeting, we're talking about kind of like, self massage and how they're kind of relieving the aches and pains their muscles, so it was, yeah, it was quite a different meeting. And, but it's, it was good, and it was nice. And it and there was actually people in my meeting last night that have never been able to come to a physical meeting. Yeah, aren't travelled or they can't drive or it's even though I do the I do the Thames Valley area, but it was, you know, a little bit too fast and to come. And so it was amazing. I was managing or we weren't charity managing to support people that haven't felt supported before. Hmm,
that's really good.
Yeah, but I just Same time, it It wasn't the same as a physical meeting, you know, people can't go off and chat easily and it was very much. There was one conversation, whereas it support group meetings, although there's one main conversation people do break off and, and have little chats and support each other. But
yeah, it's a little bit of a different kind of social dynamic in that sense, isn't it?
Yeah, definitely. But it was still absolutely hugely supportive. And which was which was amazing. And it was, it was really needed. And I I really do hope that as a charity, we're making quite a big difference in how people are coping with anxieties but also, we're giving people tools you know, for other things to do and other things to think about. And, you know, there's a crafting group and I keep seeing people post all of the you know, all of their crafts online and things like that, and it's it's really nice is positive.
Yeah, that's really good. And I think taking up a project, like a craft project or something else like that it's really beneficial for just kind of keeping your anxiety at bay and kind of being able to have something to focus on, you know?
Yeah, definitely. I mean, I think God - gardening and so, eh, it's funny. I'm actually and a couple of weeks ago, I think I was probably struggling a little bit. I think I didn't want to stop living slightly different now. I'm quite an outdoors person inside all the time. But now I'm too busy. I've got too many projects, too many projects on. I don't know which one I'm going to pick this evening on.
I start to have too much than too little going on, I think,
Oh, definitely. And they're, you know, they're all very positive things and things I actually I feel like I want to do them now. Whereas a couple of weeks ago when we were starting out this kind of lockdown journey. I was I think I was reluctant to, to pick too many indoor tasks, but no, I'm definitely I'm starting to enjoy it.
And how we find it working from home as well, because for a lot of people, that's a completely new experience. That's also the hard thing about zoom is the fact that everybody in the house is on a zoom call all the time. You know,
Yeah, that's pretty funny. So I work from home normally, and I only go into the now working part time, and I only go into the office and only one day a week. So I'm not I'm quite lucky in that I was fully set up to work from home. And actually, it's been really nice for me because we didn't do a lot of this online stuff as a we're very our charities very small team. And we didn't do a lot of this online stuff before but now I get to see everyone all the time. You know, whenever we're And it's quite I feel more connected. Although I'm not going to the office, I feel more connected to the rest of the team when I'm at home now because I think everyone else has started to understand kind of home working. And I've been really lucky because I had everything set up before. And I think a lot of people especially with conditions like us, they probably have the right desk and the right chair and everything and the right computer all set up at work. And, and it's been I've known I know, for my husband, it's definitely been a challenge to provide a comfortable working environment for him at home. And we have to be in completely different places in the house because we're both always on on calls. And then the funny thing is in our house, so I've obviously I've always worked from home. We have two dogs, they always sat by my side. They've now become complete traitors. Oh no. They spend most of their day and my husband new office. I'm so typical. They only come to me when they need letting out of the back door, which is, unfortunately quite constant. But though it's, it's quite funny, so I've adapted quite well. And I definitely, you know, it's been it's been harder for my husband because he's he only he used to work from home one day a week when I used to go into the office. Yeah, I think definitely missing those kind of social chats but he you replace it, you end up you know, calling your work colleagues and things instead.
Yeah, it's about making adaptations, isn't it? It's all we've got to do. We have no choice but to do that right now.
Yeah, definitely. I think and I'm staying positive. I know it's not Yeah, it's nice in the same way but I'm definitely I think the most things we all are missing our friends and family
are missing. meals out as well. Oh my god never cooked so much more math.
Yeah, I think Yeah, definitely. I mean, I'm not too much I'm definitely missing we quite often go to my parents for a race dinner every Sunday. We'll go we leave them the dogs when we go out on a long bike ride, and then go back for raced in, and I'm definitely, definitely missing that. And my my mum's got a chronic form of leukaemia, she's she's very well and very healthy, but it puts her in a very high risk group. And so I think the reality for our family is that even when lockdown finishes, it's not going to be for everyone. It's not going to be straight back into normality. You know, it's going to be a very long time before it's safer for our family to go back to normal in the same way it will be for you know, a lot of families in the UK.
Yeah, definitely. I mean, that's the other thing as well. It's like what is normal anymore looks more normal. Isn't it completely changed?
Oh 100% and i think i think it will take us quite a while to start trusting things again in different social situations. And I think, you know, there's a lot of people that were suffering with social anxieties and things anyway. This is just gonna exasperated a huge amount, but it'll be I think it'd be very interesting to kind of see what what happens like, I think I'll find it interesting how I'll react because I've got no idea how I'm gonna react to anything so alone, other people,
it's funny you say like, because I was thinking about that today. And I thought, you know, I'm thinking about like, going out more and like missing certain things and stuff, but when it actually time actually comes to do that. I'll probably be like, so overwhelmed by all the sounds and the lights and the smells and they'll just be like, Oh my god, I can't do
this. I'll go back home. You know,
as well like So, yeah, definitely I think
I've had because I've had periods in my life I haven't been as well as I am now. And I've been indoors a lot. And it's actually it's funny. It's kind of taken me back to those times. And I remember after having had periods in hospital, that going outside and being on busy streets and being in busy places was really overwhelming. Yeah, almost forget how to cross busy roads. Like, it's like putting someone from the north coast of Scotland and certainly transporting them into London.
And it's, you know, we just haven't had that big enough. Have we? And it's
Yeah, it's gonna take us a little while to get used to it again. Definitely. Yeah.
Thank you so much for sharing it and sharing that with us today in our lives. It's been absolutely amazing. is listening and stay safe, stay healthy and stay enables. Thanks, Natalie. Bye