S2E26 Coffee Break with community member Bron Webster

Geoff Allix  00:02

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 in 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 today’s Living Well with MS Coffee Break episode is Bron Webster, Bron is host of the MS Show podcast and was diagnosed MS in 1996. So welcome, Bron.

Bron Webster  01:15

Hi, Geoff, It’s great to be here. Thanks for having me.

Geoff Allix  01:19

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

Bron Webster  01:26

Yeah, sure. So I’m going to be 50 later this year. If you’re listening in the future, obviously it’s 2020 at the moment. So just to put things into context, I’m 50 now, and I live with my husband and my daughter, we are near to Woburn Safari Park, so we’re just south of Milton Keynes. and I haven’t got anything else really interesting that I need to share at this stage. I think I live a nice life up near some Duke of Bedford’s woods and just get on with what I need to do with MS.

Geoff Allix  02:11

And when were you diagnosed with MS. Can you describe your MS journey?

Bron Webster  02:16

Yeah, sure. So I was diagnosed back in 1996. So I was aged 25 at the time and my MS journey, I think, first of all, I was diagnosed probably earlier than somebody with my symptoms might have been, but my dad has got MS as well and he spotted some of the signs and signals. So although I didn’t know about his MS at the time, he obviously had a quite word with the GP and then probably had a quiet word with the neurologist and said, look, I’ve got MS and, you know, there’s a chance that what she’s experiencing could well be the same. So I spent, I think my 20s, probably the bulk of my 20’s relatively symptom free with relapses that were quite sensory based and I think I lived in denial in my 20’s. So I was being invincible as you are when you’re in your 20’s and possibly in denial of there being anything really wrong with me because it wasn’t affecting me. And then, as time went on, I had a couple of bigger relapses that had more of an impact on me. So started with remitting, relapsing/relapsing remitting whichever way, started off with that diagnosis and I think I’m probably now classed as secondary progressive multiple sclerosis. Because I’ve had a few big relapses that have left me with left side weakness so that that is all the way down from my face, down my shoulder, my arm, my hand, and then down my left foot, and then with foot drop right on my toes. So that’s kind of where I’m at with MS. I’m currently living in dire denial, again, at my recent, being told that I am secondary progressive. So that’s where I am with my MS.

Geoff Allix  04:34

What do you feel has made the biggest positive impact to your MS symptoms?

Bron Webster  04:41

I think the biggest impact has been for me around positive mindset and I’ve always had quite a positive outlook on life anyway. But I’ve tried to take control and It’s not easy to take control. So I tried to take control where it’s possible to take control. So I try to control what I eat, and I try to control doing some movement regularly. So it’s all the different things that I can control. Knowing that MS is a little bit unpredictable. It’s more than unpredictable, It’s like yesterday, I spent the day doing nothing because my brain wasn’t functioning. So I think the positivity in my mindset, and deciding what I’m going to control has really had the biggest impact on my symptoms. Just doing what I’ve decided I’m going to do and I think one of the big things that I did was I made a decision that I was going to control my days, and how my days looked. So I gave up my career, which is a big thing to do. And then shortly after that, well a few years after that probably, I decided that, actually, it’s not working for me to try and do things early in the morning. So I made a decision that I’m not going to do anything that happens before 12 o’clock midday. So it’s an element of control. But it’s a physical, an actual thing that I’ve implemented, that suits me. So that has definitely had an impact.

Geoff Allix  06:49

And what is your greatest challenge with MS? And how did you overcome that?

Bron Webster  06:55

I think the biggest challenge that I’ve had was a relapse I had when my daughter was three months old and I think the impact of that relapse at the time, meant that I didn’t feel safe to hold my baby because my arm was so weak and I was struggling to walk, I couldn’t get up and down steps. So that was the biggest challenge and in terms of how did I overcome it. The hardest part of that was down to me, because I didn’t want to give in, I didn’t want to ask for help, when actually, that’s all that I needed to have been willing to do. So it actually took me quite a long time to overcome, not only the impacts physically of the relapse, but the emotional impacts, and the guilt that I was feeling for not being able to be the mum that I wanted to be and I’m sure that’s common for lots of other people that have got MS and just for mums, generally the mommy guilt, but I think, doubly so, because I was balancing it with an MS relapse, and in terms of overcoming it. I know what I could have done and instead I spent a good 12/18 months, kind of coming to terms with it and that was the point at which I realised that Bron, you just might need to get some help and then started employing somebody that could help me around the house and started employing people to look after my daughter when she was tiny. So I think the way I overcame it actually in the end was by admitting to myself, it’s alright, it’s okay to ask for help.

Geoff Allix  09:09

I know you’re quite active in the MS community. Can you tell us how being part of this community has helped your journey?

Bron Webster  09:16

Yeah, I like to think I’m quite active in the MS community more on Facebook, I think than than anything else. But I think when you’re part of the MS community overall what that has sort of highlighted for me could be areas where possibly the support is not quite where you’d want it to be, for example, if you’re newly diagnosed, then the support might be there a little bit, but not necessarily just suitable for newly diagnosed people. That’s one thing that I’ve noticed. Another thing, for example that I’ve identified is that there is very little that’s out there that takes account of people that are classified as secondary progressive. And people when they’re told of this phase of their illness, don’t really have any support to handle that, what is effectively a second diagnosis. And so those two things have really informed me in terms of where I would like to help those people in the MS community, just to take control at those points in their life and just to find others in the exact same situation. So by being part of the community, I think, first of all, I’ve spoken to lots of people who, if they’re getting on with life in a positive way, I think they tend to be part of something bigger and I think that then enhances their positive outlook. And I know that what I want to do is really help people in the community, but through taking action. So I’m not talking campaigning action, I’m talking about personal action, and sort of learning new information, trying new activities, whatever it might be. It’s just identified for me, where I can help people and how I can help people using some of the skills that I have built up over my years since I left my career. So just to explain a little bit more on that. When I had my daughter, and I gave up my career because I didn’t want the MS to be affected adversely as a result of working in a highly pressurised job. So I gave up and then after a few years, I identified that I did need to do something in my life, I couldn’t just be a stay at home mum. So I retrained I did a postgraduate diploma and I trained to work with new parents who were going through the transition to parenthood. So I did specialist training to work with people going through quite emotional times in their life. Subsequently, when I then in 2014, I had an unexpected cancer diagnosis and at that point, I knew that what I couldn’t do was support people that needed that emotional support at that time. So I actually stepped away from the new parent community at that time and then it’s only in recent years that when I’ve kind of got myself back on an even keel having recovered physically and then emotionally that I’ve identified that I have got the skills to be able to help people going through the transition to a life with multiple sclerosis, or a life with secondary progressive multiple sclerosis. So I’m trying to use those skills and use my qualifications in the MS community. So I think being a person with MS, being a part of online groups, has informed what I can do to help other people really,

Geoff Allix  14:47

Okay, and you mentioned it’s 2020 so it’s currently the autumn or fall of 2020 and Coronavirus is still very much with us. Different parts of the world are at different phases. Some have got numbers going up, some have got numbers going down. In the UK at the moment, numbers are starting to go up again. So a bit of a worry. So that’s also case in lots of places, Australia as well, and numbers have started to rise again. But how have you had to adapt your daily habits to match the realities imposed by COVID-19?

Bron Webster  15:28

I think my answer is probably quite short and simple. Since we went into lockdown, the whole country went into lockdown. So don’t leave your house unless you need to, etc. I didn’t have to do very much adapting at all. And the reason is that I don’t leave the house very much anyway. Whatever I do, I do from home. So it really hasn’t impacted me from that point of view. I think, in making sure that I’m doing my walking regularly, because I want to keep my legs working, It’s probably made me more focused on that. Knowing that you’re encouraged to do this amount of exercise and the whole country of doing this amount of exercise, and going out for that hour per day. So I think actually, that has helped with the sort of keeping moving side of life. But the leaving the house side was no different for me. I still don’t do much getting out the house apart from my walking.

Geoff Allix  16:51

Okay. And just finally, do you have any other tips or tricks that you could share with our audience that might help them on their MS journeys?

Bron Webster  16:59

I think something that’s being beneficial for me is being informed and being informed enough to be able to have an upfront discussion with my MS team. So my neurologist, for example and I sat down one day and said, you might at some point, determine that I’m falling into the secondary progressive category. But Mr. Neurologist, I know myself well enough to understand that hearing that is going to be very detrimental to me. So if I can just have it noticed on my records that whatever you keep in your records is one thing, whatever you’re telling me outwardly, just don’t tell me if it’s something like having secondary progressive status applied to me. So that was the one thing so that it just come back to the whole being in control and taking charge of what is essentially my disease that’s living in my body. So I think there’s that part and there’s also I think, taking charge of things for yourself, so not waiting for somebody to tell you what to do. I think taking the action, finding it out yourself, being well informed and then moving down that path of taking the action yourself. And then what I was talking about a little earlier as well, I think, positive and having that positive mindset, even when the situation might feel really rubbish and I’m saying this, as somebody who’s been invincible, didn’t even recognise an MS diagnosis, but then has come to terms with it and then overcame a cancer diagnosis and treatments. I think having a positive mindset in the face of adversity, whatever that might be, you can always work out how you’re going to respond to something. It might be the worst situation imaginable, but if you can respond to it with some positive action, that’s going to move you further forward. So I think they would be my main tips or tricks.

Geoff Allix  19:56

And with that, thank you very much for joining us on the MS Coffee Break; Bron Webster.

Bron Webster  20:03

You’re welcome.