S3E5 Coffee Break with community member Katy Deacon

Geoff Allix  00:01

Welcome to Living Well with MS Coffee Break a part of the Overcoming MS podcast family, made for people with Multiple Sclerosis interested in making healthy lifestyle choices. Today you’ll meet someone living with MS from our global Overcoming MS community. Our guests will share their personal perspective on the positive and practical lifestyle changes they have made, which have helped them lead a fuller life. You can check out our show notes and for more information and useful links you can find these on our website at overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels. Finally, don’t forget to subscribe to the show on your favorite podcast platform so you never miss an episode. So get your favorite drink ready and let’s meet our guest. So for this episode of The Living Well with MS Coffee Break, I’m glad to welcome Katy Deacon.  Hi, Katy, our audience would like to know a bit about you and your life. So could you share some of your background? Where you’re from what you do, and anything about your family or personal life or about you that our listeners would get a sense of who you are.

Katy Deacon  01:13

Okay, cool right, so my name is Katy Deacon. I live in West Yorkshire and I am a mum and wife so my children are 7 and 11. So this COVID situation that we’ve been living in for what seems like forever, has been really interesting from a homeschooling situation. In terms of my MS journey, I was diagnosed with MS in 2012, but my symptoms for MS started in the summer of 2011. I started with bowel failure, which is a really odd symptom to start with, but when I walked to work, my bowel failed before I got to work. So I ended up starting work at the crack of dawn so that I could clean myself up before everybody else got in and then about four months later, my bladder failed and so I was away with my husband for a weekend away for our wedding anniversary, and we were an hour away from our home. It took us a long time to get home from that trip, because we had to stop nine times because my bladder just kept failing and failing and failing. We had to stop and I went to the doctor and the doctor said, “Oh, you must have a urinary infection.” I didn’t, they tested me, I didn’t have an infection. They told me about my bowel, that I must have IBS, and I don’t. So those were two symptoms and the doctor was like, oh my goodness, we don’t really know what’s going on then because at Christmas, my walking failed and so I was having to walk around with a stick and so when we went into the doctor, I took my husband in that time, went into the doctor and the doctor said, “Gosh, there’s something serious going on, we need to get you in urgently.” So three months later, they saw me and put me through a load of tests and at the end of the March that year, they diagnosed me with MS. So that’s where my journey started in March 2012.

Geoff Allix  03:41

Yeah, I think that’s probably the reverse of most of us. We normally I think most people start with tripping over first.

Katy Deacon  03:48

Yeah. Unfortunately, it was a weird time and it was a really scary time as well. Because I didn’t know what was happening. I didn’t know what I should be thinking and I’m a bit of a worrier, and I try to understand what’s going to happen and you just end up feeling like you’re looking or you’re in an endless downhill spiral and you don’t actually know which way you’re going and what’s gonna come next and it’s terrifying, really. But I had a young son, so he was three at the time of, well, he was two at the time of diagnosis and then when I got diagnosed, I just I took five months off work because I just needed to give myself a bit of headspace and in that time I found OMS, I read George’s book, and I booked to go on the first MS retreat, which I was so excited about and then I fell pregnant with my daughter. So I had to I had to postpone that, but then I went on the second retreat, and I absolutely loved it, it was the best, one of the best things I’ve done for my MS kind of, mental health, because I think that’s one of the really key things that I’ve learned that looking after your mental health, it’s all very well that you’re looking after your physical health and all of the doctors, the nurses, the OT’s, the everybody that is around looks after your physical health, but actually your mental health and how are you coping with this diagnosis, how are you coping with what’s happening to you, and feeling more and more unable to do things. That was such a massive thing for me and so OMS has really helped me and the targets of OMS, and the you know, the things that you should be doing every day, the exercise, the meditation, the eating, the Vitamin D, all of that stuff is so important, because there are really helpful handles to hang on to, if you can keep doing that, that’s great and now, one of the things that was such a massive change for me was that my walking deteriorated so badly that I was damaging my hands, my wrists, my shoulders, because so much pressure was going through those, and that shouldn’t be happening and so I was really hurting my body because I was forcing myself to keep walking, forcing myself to keep moving, because you’ve got two kids. So that’s exactly what you know, as a mom you want to do, you want to go help your children, to go look after them and do what you need to do and I was really damaging myself. So I plucked up the courage to actually decide that I was going to try to use a wheelchair.

Geoff Allix  07:06

Can you describe how moving to using a wheelchair has affected your life?

Katy Deacon  07:11

Yeah, absolutely. It’s massive actually and I made a mistake, because I thought one of the things that I got from the medical professionals was MS is a really fatigue-inducing condition, and therefore you need to try and not do massively tiring exercise and things like that, because it’s really gonna make you tired. So I’m an engineer, I’m really lucky. I’m a member of the Institute of Engineering and Technology and they have a charity linked to the institute called Foothold, which is a really supportive, charity, and Foothold provided me with the funds to redesign my ground floor of my home so that it is wheelchair accessible and they provided me with the funds for my electric wheelchair because we thought it was going to be the best thing to do to get an electric wheelchair. So all you have to do is use your, literally your hands to get around the house, which was fantastic. But actually, it meant that I put on a load of weight, so transferring from the power chair to a chair, to the bed, to the toilet was a massive thing because I put on weight and I wasn’t doing exercise and I mentally wasn’t in a good space and then COVID hit, which ironically was really good for me. And I needed to have a manual wheelchair to move around outside and move between the car and the house and that sort of thing and then get the chair, my manual wheelchair I used to get into the car because I dismantle it, put it in the footwell of the passenger seat so that I can go to Tescos and whatever. And so actually, I decided I was going to use my manual chair throughout the Covid time because it was easier to get in and out of different places than using the power chair. And then I use the power chair upstairs so I can put my children to bed and so the manual wheelchair has been an absolute lifeline for me because it helps me do my exercise and what the medical professional said you know, fatigue is a real thing you have to measure and manage against; that’s true but, actually doing the exercise like George said, you know making sure that you do exercise every day I was like how on earth am I going to do that? Because all I’m doing is sitting on my backside now that’s really impossible. But in a manual wheelchair, it’s that you’re able to do that, so I generally, I make sure that I do exercise every day, and I have a watch that measures, pushes that I’m doing. So I make sure that I do at least a kilometre every day and it’s hilarious. If you could see me in my house, I just do circuits, from my downstairs bedroom, through the living room, through the kitchen, through the dining room back to the bedroom and it’s so funny, but I do my pushes, and I get that exercise for myself, my heart rate goes up and that’s really important. And I think it’s really important that we are managing ourselves and we’re monitoring how effective we are, because it’s just been an absolute lifeline for me to be able to do that and I’ve been doing that for a year now and it’s fantastic.

Geoff Allix  10:56

I feel it’s a real positive I had was very early on, I saw a new neurological physio and one of the things he said is, with your MS your going to be constrained with what you can do and he said, think of that as a circle. So inside circles, what you can do. So if you don’t do anything, then the circle will get smaller, but you try and push yourself, then the circle will get a bit bigger, it won’t be like it used to be when you can train for something and you can run a marathon or you can do anything. But he said you can push outwards on that circle, and that you can try and make the circle bigger, he said but worst case scenario, you just want to try and reduce that circle getting smaller, but if you do nothing, way more than the general population, that circle will get smaller, and you’ll be able to do less and less and less, and it will just keep getting smaller and smaller and smaller. And so he pushed me to say you need to keep active and keep pushing out on what you can do. And yes, I mean you need to time things? I mean, if I know I need to do something, then I know that if I do, like a sort of exercise program before that that’s not necessarily a good idea, because I’ll be shattered. But that’s just sensible planning, but I know I still need to do, I need to take exercise, otherwise I’ll get worse. So with OMS could you say what has been the best or the most positive thing about the OMS program for you?

Katy Deacon  12:36

It’s the pillars of OMS have been really helpful for me. Because they have helped direct the route that I need to be taking. So basically, if I mentally go off, or they helped me remember, right, I need to be mindful about this, I need to do my exercises mindfully, I need to do my physio mindfully, that’s where I do my mindfulness and it’s really, really helpful. So the pillars of OMS have been really helpful for that but the other thing that OMS has really helped me with is the community. So when I went to the Ammerdown retreat, in 2013, and I met the the people who were on that retreat, we still meet, we still do Zoom calls, we still email and FaceTime and various things and it’s so the community is so lovely and the support from each other is so great. So it’s incredibly helpful to know that you’ve got people in your pocket who are just who are there, if you need to say, “Oh, my goodness, this just happened…” You know, there is somebody always there to be able to respond and support you as much as possible.

Geoff Allix  13:55

Yeah and I think if you’ve been on a retreat or not the Circles program is really useful that you can have these groupings, which are normally regional. But yeah, it’s just at the moment regional doesn’t really mean anything. Certainly the UK, where we’re now locked into houses. But it having that group of people and I’ve found that really, really useful to have a circle, as you say other people who are going through similar things. So that was positives, what have you found the hardest thing with adapting to the OMS protocols?

Katy Deacon  14:32

Um, sometimes in my life, there has been times when I just haven’t been able to stick with things. So for example, the eating and the diet I stick to religiously that’s a given, that’s just what I do. But how do you bring up two kids to understand that, how do you explain to them because we all eat OMS friendly foods. We all follow the OMS diet, even though they don’t understand that that’s what it’s called and why. So it’s how do you change? So I’ve spent, the last eight years adapting recipes. So making sure that our favorite food is something that we can all eat, and they’ll enjoy and it’s acceptable as well in the outside world, because, you know, going to a restaurant and saying, oh, I need to have this, that, and the other, that’s really hard, but actually, how can you adapt what’s on a menu to make everybody have something that they like, and that sort of thing. So that’s, that’s been tricky to try and move our world into the normal everyday world. But we’ve managed it and we’re doing really well. So at Christmas, I got some frames with my recipes in so the most common recipes, so my husband has put those inch frames there on the wall of the kitchen, so that those are what we can make and I do a lot of baking, so yesterday, I made an OMS friendly courgettet cake with lime curd, for the filling, and it was just delicious. But it’s all OMS friendly and it was because it’s my husband’s birthday was yesterday and that’s his favorite cake. So that’s what we do, we just make sure that we’re filling our lives with OMS compliant activities, and recipes and food, which has been really good. I think one of the hardest things that I have struggled with is the exercise and the meditation. When I was still trying to walk, it blew my head, how was I going to do exercise, which in my previous world, was circuit training at the local gym, where I loved bombing round the gym, and doing all the weights and everything like that, that was really, I’d gotten an awful lot out of that. That is not something that I’ve been able to do for the past nine years. So how do I change that in my head? Well, now I’m in the chair and that’s a really great thing. I’m not struggling, I’m not damaging my body, I’m actually in an active wheelchair, and I can bomb around, do exercise, really feel that my heart is pumping, my breath is blowing and I’m actually doing some really good exercise, even though I’m in a wheelchair, which is fantastic. So now I’m in a much better place to be able to do that exercise element, even though I’m not as able bodied as I was previously. And to make sure that I keep my meditation going, I have well, I don’t have to I haven’t been told to do it but I do physio, stretching and exercises every day and I make sure I do that mindfully. So I make sure that I have those stretches for longer and I have those stretches really mindfully, I understand and I am thinking about where my body is and how my body is feelin and it’s really good. So I think I’m in a much better place now even though I am in a wheelchair, because I don’t feel I am stuck in a wheelchair, it was my choice and actually it was a much better choice to do that and to be in a wheelchair and to be active in a wheelchair because it is actually incredibly liberating.

Geoff Allix  19:03

And you’ve mentioned about being a mum so how do you manage being a mother with MS?

Katy Deacon  19:10

Well, I think for me, it actually helps educate my children into things that they wouldn’t necessarily see otherwise. So they see me in a chair. My children can’t actually remember me walking around. I’ve always been in a chair in their minds. And that’s okay. They still draw me as tall as Daddy because I am the but they don’t really draw me in a chair. I make sure that I’m with them. I do the activities with them. I take my daughter to dancing on a Saturday when we’re allowed. Because I am still active. I am still able to do those things. And I sit with them. We do homework together. I help them. They come to me because they’ve got concerns about something. And that’s, that’s exactly what, you know what I wanted to always do with my kids, I’m part of their life. And they, they like being part of my life. I mean, we bake all the time. We love baking. And I mean, my son, he did a project, he’s at high school now, he did a project, and the project was about careers, and what careers could he have in the catering industry. And they, their project was to create a product to sell that had a unique selling point. And his product was vegan chocolate brownie, which we have made previous weekend. And so he made that into the product with the unique selling point of its vegan healthy chocolate brownie. So why wouldn’t everybody want it? And that was fantastic. Because if so what I’m having to do and how I live my life and how we live our lives is impacting on them in a really positive way, which is great.

Geoff Allix  21:05

And just to wrap up, is there one piece of advice that you could share with people new to the OMS program. And what would that be?

Katy Deacon  21:17

I would say that it’s really important that you you look at the principles of OMS. And you actually, you actually understand them as to how how they can be adapted into your life. But if you’re newly diagnosed, it is incredibly frightening time. And it will take time to get over that initial diagnosis. And it will take time to deal with any other symptoms that come out as well. So for example, one of the latter symptoms that I’ve recently developed is an intention tremor. And so I am now I work full time, and I’m Data Protection Officer for the local council. So I have a really responsible job, I have to be writing reports, delivering reports to directors and presentations to directors and to partners. And that’s an incredibly intense job. But within intention, tremor, you can’t, you can’t type. So what I’ve done is I have a voice to text recognition software that my my companies have bought me. And so I speak my text and the computer writes it down. And so I would say in our world of brilliant technology, this COVID world has really opened up an awful lot of other opportunities. So please don’t despair. There are ways through your, your journey with OMS. It’s not as I had thought going to be an absolute end of life. Even moving into a wheelchair is actually a really, or can be a really liberating experience. So please don’t think it’s an end of life diagnosis. It’s just a change in scenery and you just have to look at it in a different way that is very hard. Nobody’s saying it’s easy, but it is possible to get through it.

Geoff Allix  23:30

Thanks for that. And thank you very much for joining us on this episode of The Living well with MS. Coffee Break. Go to Deakin. Thank you. Thank you for listening to this episode of living well with MS. Coffee Break. Please check out this episode show notes at overcoming ms.org/podcast You’ll find all sorts of useful links and bonus information there. If you’d like to be featured in a future Coffee Break episode or have any suggestions, please email us at podcast@overcoming ms.org You can also subscribe to the show on your favorite podcast platform so you never miss an episode. Living Well with MS Coffee Break is kindly supported by a grant from the Happy Charitable Trust. If you’d like to support the Overcoming MS charity and help keep our podcasts advertising free. You can donate online at overcomingms.org/donate Thank you for your support. Living well with MS Coffee Break is produced by Overcoming MS, the world’s leading multiple sclerosis healthy lifestyle charity. We are here to help inform support and empower everyone affected by OMS. To find out more and subscribe to our e-newsletter, please visit visit our website at overcomingms.org Thanks again for tuning in and see you next time.