S2E28 Coffee Break with community member Alex Storey

Geoff Allix 

Welcome to Living Well with MS Coffee Break. I’m your host, Geoff Allix. We decided to do something a little different in expanding the range of content we produce here at Living Well with MS. Since our community forms the beating heart of Overcoming MS, we are commencing this special series called Coffee Break, which features short interviews with members of the OMS community, talking about their personal journeys, adopting and staying on the OMS seven step recovery programme, the challenges they encountered, and how they overcame them, and their tips and tricks for sticking to the path that leads to better health. We hope you enjoy and learn from these brief chats between our regular episodes and as always, your comments and suggestions are welcome by emailing [email protected] that’s [email protected] and don’t forget, if you enjoy these and other Living Well with MS podcast episodes, please leave a review on Apple podcasts or your favorite podcast listening platform. Joining us on this episode of The Living Well with MS Coffee Break is Alex Storey. Welcome Alex.

 

Alexandra Storey 

Thank you. Nice to be on here.

 

Geoff Allix 

Thank you. Could you tell us a bit about yourself, your family, your life where you live and anything about yourself that you’d like to share with us?

 

Alexandra Storey 

So I’m 35 I live in Essex, which is just outside of London and I live with my husband Sam and my dog Elsa and I work in the financial services, I was commuting into London but obviously with Coronavirus I’m working from home a lot now.

 

Geoff Allix 

Okay and when were you diagnosed with MS and how long have you been following the OMS program?

 

Alexandra Storey 

It’s a bit complicated how I got diagnosed with MS. I got diagnosed in 2019, they thought it was MS in the April, but then they had to rule a lot of things out, so I didn’t get the official diagnosis until end of June 2019. My symptoms started back in October 2018, my toes went numb when I was on holiday and I thought it was something to do with the shoes I’d been wearing for work the week before. But by the end of the two week holiday, the numbness had spread into the inside of my feet and then over the next six weeks, the numbness just continued to spread up my legs. So I ended up going to the GP, because I’d been having problems with my chair at work they just put it down to lower back pain and a trapped nerve, they gave me some anti-inflammatories and then I was back at the doctor’s 10 days later because it had spread almost to my waist. So they then put me into A&E, did an emergency MRI, nothing came up. I saw a neurologist at that point, who I wouldn’t wish on anyone, he took that I had anxiety and I, at this point, said that my aunt had MS and he just laughed at me and said, did I know what MS was? Because if I had MS, I wouldn’t be presenting parallel. So then I spent another, how many months I mean, that was the November, I spent until the March when I was then put into hospital again because my foot started to drop. But the numbness had been spreading all this time, almost to my shoulders, and they did an MRI of my brain and it came out that I had lesions on my brain, and they had to do another one as well for my neck, and then they found some lesions on the cervical spine as well. But it was a complicated process. I wouldn’t wish it on anyone because I spent months thinking, is it just anxiety? Is it just me creating all the symptoms? And then, it was just utter relief to be honest, when I was in the hospital in March and it was confirmed that yeah, I had oligoclonal bands found in my lumbar puncture. It was just an absolute relief to find out that yeah, I hadn’t been making this all up and it’s quite a confusing story.

 

Geoff Allix 

Personally, I think it confuses people who haven’t got MS when we sometimes say it’s a relief, but when you’ve got these symptoms, and then you start to think, what else could it be? And then that can be really worrying and you start thinking it could be, you know, inoperable brain cancer, or it could be, you know, there’s countless things that it could be. So in actual fact, having this thing where you’ve had these weird symptoms, probably for years, and having it defined as an actual thing, because I went through the same, sort of the doctor saying, No, it’s not, that’s due to a trapped nerve, that’s due to back problems, that’s due to this that’s due to that and you think, blimey, I’m getting lots of things going wrong with me, and then you start to worry and actually having a thing I know, it’s not a good thing, but it’s at least something to think well, I can know what it is now and then I can know how that can be managed, can come as a relief.

 

Alexandra Storey 

Yeah, I mean, I have to say when I got told it was relapsing remitting MS, rather than than NMO (euromyelitis optica), which they had to rule out, during that April to June period, we went out for a celebratory drink. I mean, who goes out to celebrate when they’re diagnosed with MS? But yeah, it was a funny old time, I spent an awful lot of time on the internet thinking, blimey could I really have created these symptoms just through anxiety? And it was only after talking to a friend who’s suffered with anxiety really, really badly for many years, that I just thought, I don’t think like her at all. I’ve got a much more optimistic outlook, I overcome things a lot quicker than she does. How on earth could I have done this to myself? And I was kind of googling what part of the nerves if you like, because I couldn’t sense any vibrations. So as I was looking at what part of the nerve senses vibration, what illnesses could affect the sense of vibration and things. I mean, I really probably wouldn’t recommend doing too much research on Google, but for me, I needed to do it to kind of prove to myself that I wasn’t going mad. And when I thought, yeah, I think that this could possibly be MS, but where the doctors are still kind of saying it was anxiety, I looked at my aunt and I’m not particularly close with my aunt, but I knew that she had gone on to a vegetarian diet as soon as she got diagnosed about 12 years previously and she hadn’t had any relapse that I’d known of. So I just Googled vegetarian diet/MS and OMS was one of the first things that came up and so because I wasn’t getting any help from anyone at that point, and I just needed to do something to make myself feel like I was helping myself. I started the OMS programme, so that was in the spring 2019 and then I felt very, very good at myself when it got to the March and it was like, not completely confirmed, but it definitely like there was a suggestion that it was MS. Made me feel a lot better that yes, I started it early, I did know what I was talking about, if you like. And, yes, so it was quite, I was quite early on in, I hadn’t even been diagnosed and I started OMS, just because I really needed to try and help myself.

 

Geoff Allix 

Yeah, okay. That’s I mean, it’s a similar story to me, because I think it’s probably the NHS in the UK is great at some things and not so good at others and one of the problems is that it can take quite a long time to get diagnosed with things and I had a very similar story, it took ages to get diagnosed. Went out to Google, my wife actually discovered OMS and then yeah, I was on OMS actually, before I was technically, I was told I almost certainly had MS, but I needed to have all these tests done. So it’s a bit more of a certainty for me. But still, I got no treatment or help because I didn’t officially have it. So yeah, all you have is Google and yeah, so then I started OMS when I found out about it because I wanted to do something like you. I first came across you @thehiddenstorey on Instagram where you post lots of cooking ideas for people with MS so you’re quite a creative chef, could you share a bit about your culinary pastime and what that means to you and how that might have helped you with MS and OMS?

 

Alexandra Storey 

I’ve got quite a creative side to me, I’ve got an MA in Design and even though I’ve been working in financial services, when I’ve come home on an evening, cooking has been my creative escape, you know, it’s something I need to do, we need to eat in the evening. But I’ve always liked to try and be experimental and creative with what we’re eating. So when it came to the OMS diet, the diet section of the programme, I just started to kind of go slightly crazy, it just unleashed my creativity. Okay, right, so I’ve got these kind of constraints, obviously like with the oils, no meat, no dairy. Just what things can I make that are reminiscent of what I used to have so Deliciously Ella, for instance, she’s someone that you always associate with being a vegan cook, but I find that a lot of the food is quite sweet, she uses quite a lot of spices and things and coconut and avocados and I just don’t want my cooking to all be about that. I wanted to think, okay, we can have like a traditional tasting meal, like your toad in the hole or bubble and squeak but make it vegan, make it not feel like it’s vegan. Do you understand what I’m saying there?

 

Geoff Allix 

Yeah, cooking was something that, my brother was a chef, and so there’s always been a lot of cooking around and it is one of those things, there were a few key things I really wanted to, to work out. So a Cornish pasty was one of them, how I can make a Cornish pasty became a bit of an obsession for a while. It’s in the OMS cookbook and there are a few in there, I think i’ve got four recipes in there. Because, there were a few key things. There’s some things which people think “well, how would you do that like a roast dinner?” But actually, I don’t have a problem with roast dinners, because I just do a tray of roasted veg and then I kind of have that instead of the meat part and then you can do roast potatoes in an OMS friendly way. So that’s not a big issue, I’m not worried about the meat, I just have lots of vegetables and that doesn’t worry me at all. But yeah, there are some meals that are impossible, but there’s a lot of meals, where you just think, okay, how would that work? With things like without frying, for example? Or how can I make that work without that meat element? Or would fish work instead and things like that.

 

Alexandra Storey 

Because obviously, like with OMS, you bake a lot more, I find that I’m baking a lot more now. I’ve recently got myself an oil sprayer. And you know, it’s spraying a very small amount of olive oil over top of the meals. But it definitely gives that nice golden look to things that you might not have gotten if you just put it in the oven without any kind of oil on top at all. You know, it makes it feel a little bit more like your traditional cooking.

 

Geoff Allix 

Crunchy. I think Jack McNulty on previous episodes, there was the science behind it, which he sort of explained. But yeah, that sort of crisping on the outside, that sort of caramelisation.

 

Alexandra Storey 

Yeah, sometimes, I made colcannon last night, I make it with anchovies rather than bacon. As Nigella says anchovies are the bacon of the sea, so they can give a really nice depth of flavour, but I sprayed the oil over the top and where I haven’t done it in the past, I haven’t had my oil sprayer, it’s ended up looking kind of quite dark brown on top. But last night it was just lovely and golden because it did have that little bit on top but it’s just knowing that you only need a very small amount, but it can really make the difference and  make you think yes, I’m eating more of how maybe I would have eaten in the past. It doesn’t make it feel as if it’s too far away from what you were eating in the past.

 

Geoff Allix 

And if it’s extra virgin olive oil and you’re not frying it, you’re baking it that’s fine, isn’t it?

 

Alexandra Storey 

Yes, exactly.

 

Geoff Allix 

So, this is being recorded in what’s now the second wave in the UK of the COVID 19 or Coronavirus pandemic. So, that’s obviously had some effects on your lifestyle. So how have you had to adapt your habits, your diet, exercise, mindfulness and so on to match realities imposed by COVID-19?

 

Alexandra Storey 

If I’m really honest with you, I don’t feel the lockdowns have impacted me that much. I’ve still been recovering from my relapses last year. So it doesn’t feel that much different, you know, I’m spending a lot of time still at home. What is nice for me in a way is that my husband’s now here with me, rather than having to do a two hour commute either way to where he was working. I have made more of an effort to really push myself on the exercise front, and because everyone was talking about Couch to 5k, at the beginning of lockdown getting themselves out there. I started doing the Couch to 5k, It’s taken me a long time, but I’m really pleased at how I am progressing with it because I wrote a list about this time last year of 100 things I wanted and one of them was to be able to run 5k along the seafront near where we live and I’m doing that now. It feels really nice that I’ve achieved that and also, I suppose having MS and doing the OMS programme, having read Dr. Jelinek’s book, you need to kind of just accept life and just get on with things and enjoy being in the moment and enjoy what you’re able to do today. And because I’ve been having that mentality and my husband has got that mentality now as well. We were meant to get married in September this year, we were meant to have a big wedding, 100 to 150 people, we weren’t sure what was going to happen. But we could still have the church for the date in September when we were meant to be getting married and we thought well, hang on, it’s looking like we’re going to be allowed thirty guests, let’s try and make this work for September and we had to arrange things in a very different way to what we had originally intended. Like have a picnic reception in the park, and then do a pub quiz in an outside terraced area in the evening. But we managed it, we managed to get married.

 

Geoff Allix 

Oh, by the way, congratulations.

 

Alexandra Storey 

Yeah, the only thing that was really stressing me out with the wedding was I’d set myself the target of making our cake. And I’d had my gran and my mum testing out OMS friendly sponges that I’d been devising and they weren’t the nicest about it and in the end, I just I ended up having to do like a Mary Berry sponge for everyone else and then doing a little sponge for me on top, that was a vegan one. But yeah, it was really nice. Everyone that went kind of was saying they’re going to remember it. It was an unusual day, if you like, and we just wanted to get everyone together that meant an awful lot to us, for everyone to have some good food and some good drink. And for us all to just remember having a nice bright day, if you like in the middle of this very, very strange year. And it didn’t matter if it wasn’t all perfect. You know, we can have a big do with everyone that we were going to invite at another point, we can have another big party on the anniversary but yes, being part of the OMS programme, and just accepting things. I think having MS has made me kind of realise things don’t have to be perfect. You know what I mean? I shouldn’t be aiming for perfectionism all the time, because it stresses you out, nothing can be perfect all the time, you just got to go out and have fun and enjoy yourself and, enjoy being in the company of those people that love you. You just don’t know when things can get taken away from you.

 

Geoff Allix 

So what are the reasons that you are going to support OMS for the Giving Tuesday campaign?

 

Alexandra Storey 

My experience of OMS over the past year, since I’ve been diagnosed, they’ve given me so much hope. It’s given me the belief that I can get better by making lifestyle changes. And it’s given me so much optimism for the future and my mum was well, we both went to the OMS Edinburgh conference in June 2019 and we we both came away from there thinking, yeah, we’ve got this, we can deal with this, we can deal with me having MS and it doesn’t need to be the terrifying diagnosis that it could have been.

 

Geoff Allix 

Okay and so if anyone wants to, it’s quite easy to find Giving Tuesday, searching for it and you can you put OMS as a charity you’re supporting, which would be great for OMS. And do you have any other tips or tricks that you could share with our audience that could help them on their health journey?

 

Alexandra Storey 

Um, I would say one of the biggest things for me, has been connecting with other people in the MS community over the past year. I’ve made some really good friends now. I’ve always been very open about my diagnosis, right from the start and it’s meant that people said, “Oh, I know so and so that’s got MS. Do you want me to see whether you can meet them for coffee?.” And so all those opportunities I have gone along and I’ve connected with fellow people who’ve got MS and it’s been so helpful. It’s really made me think yeah, it’s fine, I’ve got a lot of support. Every time like something’s not feeling quite right, you know, I’ve got someone to talk things through with. It’s just made it so much easier, I would just say get out there and talk to fellow MSers.

 

Geoff Allix 

OMS circles programme, there’s a community of OMSers around the world that have groups that meet up or not meet up in person at the moment.

 

Alexandra Storey 

I’ve met a lot of people following OMS through Instagram, and using the hashtags on Instagram. Like #OMSfriendly, #OvercomingMS, #OvercomingMultipleSclerosis. People are using those hashtags all the time. That you kind of get to see people that might be the same age group as you, might be going through similar things to you that are following the diet or trying their best to follow the diet and the program and it’s been a great way of connecting with people.

 

Geoff Allix 

Okay, thank you for that and thank you very much for joining us on the OMS Coffee Break Alex Storey.

 

Alexandra Storey 

Thank you for having me.