Invisible Me Podcast
Join Pat Porter on Invisible Me, a show that discusses invisible health issues and the feeling of being unseen and unheard. Through informal fireside chats, Pat and her guests share their personal stories of living with hidden conditions and disability. They discuss the emotional and physical impact of chronic illness, the challenges of navigating daily life, and the importance of support and acceptance. Invisible Me is a safe space for honest conversations, providing insight and community for those affected by invisible health issues.
Invisible Me Podcast
Janet Taylor: Keeping on running with multiple sclerosis
In this episode of Invisible Me, Janet Taylor shares her experiences living with multiple sclerosis (MS). Janet discusses the background to her diagnosis, the challenges she faced adjusting to the news, its effect on work and life, and the ongoing management of her condition.
As well as reflecting on how her diagnosis made sense of pre-existing symptoms, Janet and Pat address the challenges Janet has encountered living with an invisible condition, as well as her triumphs, including her active lifestyle and continued passion for competitive running. Janet also offers practical tips and a positive outlook for those navigating life with MS.
Intro music by Ben Blanchard.
Edited by Tom Haigh.
Welcome to Invisible Me - a podcast centred around invisible health issues, and the feeling of not being seen and heard. Yet here I am standing right in front of you. Does this sound familiar? Well come join the conversation, share your experiences. Let's break down those norms and attitudes for the better. This is a safe space to chat with me, Pat. Welcome, Janet, thank you for coming along today to have a chat about, a little bit about yourself and your illness, and how you manage it and your day to day living. So could you just tell me what your invisible illness is?
JANET TAYLOR:So I've got multiple sclerosis.
PAT PORTER:And then thank you for sharing that. What I really wanted to know initially was the diagnosis, how difficult was that? Was it a long process? Was it straightforward? Could you share with the listeners how you were actually diagnosed?
JANET TAYLOR:Yeah, so obviously I didn't know what it was. I started off with, I'd lost feeling in my leg. I was doing a race in Blackpool. So I was doing a running race. And I said to my partner was in the car. And I said, you know, I said, I can't really feel my legs. I said, but they're there, obviously. And, you know, I'm still up for doing the race, but they just feel really strange. So I did the race, and finished it in good time and everything. And I didn't feel ill, and I felt fine in myself, I just had these strange feelings.
PAT PORTER:Yeah.
JANET TAYLOR:So I didn't really do anything about it. I just thought, oh I've trapped a nerve or something in my back. And I was chatting because my neighbour is a physio. You know, I've got, my legs feel funny and I think I've trapped a nerve and she said, "just let me feel your back". So she felt my back and she said "doesn't feel like you've trapped anything." She said, "maybe I think you need to go and maybe go to see your doctor. Because it's, you know, it doesn't seem to me like it's a trapped nerve." So, I thought, okay, then. So, the next day when I was at work, I made an appointment to see the doctor, but they wanted to see me that day. So I went in after work, I think about four o'clock or something. And I was chatting to the doctor, and she was asking me all these questions, and what does it feel like? And she said,"I think you need to go to the hospital. Have you got transport?" And I said, "Well, I can get on the train", you know, and I said, it's not a problem."No, no, you won't be coming home" and I went, oh right.
PAT PORTER:Yeah.
JANET TAYLOR:So it was a bit of a shock to say the least.
PAT PORTER:Sure.
JANET TAYLOR:So my partner was working in Derby. So he was coming back to Skipton on the train and the car with it Skipton. So I rang him and said,"Oh, can you meet me?" And he took me to the hospital, and stayed with me while I had quite a few tests. But then obviously, he had to go home, because it was late on. And I stayed all night. And they kept coming to get me and taking me off to do X rays, and can you stand up and do this and do all these different exercises. And so then I think they ruled out certain things that it was, it wasn't, you know, what they thought it might be, which was something a bit more serious, to them anyway. And they said, well, you'll have to come back for different tests, you know, to see what it is. So I went home that day, and then I got called in for an MRI on my back. So I had that and then, which was like a week later, and then the results from that they weren't happy with. Can you come and have another one? So I had to come back and have another MRI. So I was like, right, okay, so another week. But I felt alright in myself. I felt fine. I didn't feel ill, didn't, you know, wasn't in pain. So I wasn't like overly worried, if you know what I mean? Because I just thought it was something and nothing. And then I got called to go and see a neurologist at Airedale. And obviously in my mind, it wasn't, because I didn't feel ill, you know, I wasn't in pain. I wasn't overly worried. And so I went on my own to get my results. I said no you don't need to come with me I'll be fine, you know, nothing to worry about. So the doctor sat me down and he was, had my X rays on the wall. And he was showing me this little white blob on my back. And then he showed me my X ray of my head. And there was some other white blobs, which was like, right, okay. So then he was trying to explain to me that these white blobs on that brain were multiple sclerosis. And the one on the back was the, was what was causing the loss of feeling.
PAT PORTER:Yeah.
JANET TAYLOR:So apparently, my immune system sort of was attacking, this little white blob was it means that it's like a covering on your spine. And instead of being covered, it sort of attacks it instead of not
PAT PORTER:Ignoring it.
JANET TAYLOR:...and just be left alone sort of thing. But your body's attacking, attacking it, which caused this white blob, which caused the numbness in my back. So I was, I was a bit honestly quite taken aback to say, I've got multiple sclerosis. And I was like, okay. And he said, I'd probably had it for years.
PAT PORTER:Oh, wow.
JANET TAYLOR:But I've never obviously associated any of the problems. I've had to be something serious. Because I've just obviously just lived with it and just thought it's, it's nothing, and not done anything about it. So then they took quite a few, they sent me off to take have a load of blood tests, which was, I was just sat in the hospital. I wanted to cry. But I was like, no.
PAT PORTER:Of course!
JANET TAYLOR:I was quite, quite, shocked.
PAT PORTER:A massive shock and kind of a life changing shock. And I guess then you wished you didn't go on your own for the diagnosis.
JANET TAYLOR:...because he did say to me, "have you come with anybody?" And I went "No".
PAT PORTER:So from that, I'm assuming they didn't give you any hints or any clues the weeks before. And all the tests didn't imply what they thought it might be so kind of good, but didn't give you a chance to prepare for what it may be? So yeah, massive shock. Well, I think you're super resilient. Like you said, you've ignored it all the way through. If you've had it for years in the background, you've just carried on with life. I mean, when it first really came to the forefront, and it was the legs were getting a bit numb on that day of the race, you still did the race! I think you're awesome! [laughs] That's incredible. So after that, can I ask what was the plan of action? The treatment, what you have to do, what not to do? How was it gonna affect your daily life?
JANET TAYLOR:Yeah, I mean...
PAT PORTER:What changes did you have to make? How did you cope, Janet? How were you managing from that day onwards?
JANET TAYLOR:I think it was a bit, I mean, they were really, really nice at the hospital, and they assigned me a nurse, which, you know, I have a personal number and personal email. And she actually came to see me at home, sort of to explain things to me and to my partner so that, like, because obviously he was really worried. And though, you know, you're going to end up in a wheelchair, you're not going to be able to walk, you know, all these things are going through his mind. And he was thinking I could die!
PAT PORTER:Well, we, our minds do run, a natural thing to do. So. And another thing is not to Google it! [laughs]
JANET TAYLOR:But she was really nice. She came to the house and she explained, you know, what can happen. And, you know, not to not to worry as much because there's different types of MS. And apparently, most people are diagnosed when they're in their teens.
PAT PORTER:Right
JANET TAYLOR:So, and then it tends to get progressively worse. So mine is sort of an intermittent MS.
PAT PORTER:Okay.
JANET TAYLOR:So it can come and go, which is hence the feelings, I lose feeling sometimes. So, you know, like I'm not debilitated as much as you can be with it.
PAT PORTER:Yes.
JANET TAYLOR:But one thing that sort of was a big hindrance at the beginning was I had to inform the DVLA that I had MS. And then that wasn't allowed to drive.
PAT PORTER:That's something I wouldn't have thought of at all. But of course it makes sense.
JANET TAYLOR:So they said I couldn't drive until they'd spoken to my consultant at the hospital and had a report whether I was fit and able. it So then obviously this affected me at work. And I had to tell my boss that because obviously I use the works car every day, that I couldn't actually drive myself. So obviously I was on the works in insurance. So once they've told them this they said, well, you you're not allowed to drive. So he was really good. And I said, look, you know, I'm still willing to work, you know, I don't feel ill and it's not an issue to work. So he actually drove me to Bentham and brought me back every day.
PAT PORTER:Oh, that's so kind and caring.
JANET TAYLOR:He just took me in the morning, dropped me off, and then he came back at five o'clock to pick me up and bring me back. And it did take quite a long while I have to say, the DVLA are absolutely atrocious. It took them more than six to eight weeks before they actually replied and said yes you can drive.
PAT PORTER:Crikey and are you still driving to this day?
JANET TAYLOR:Yes. I've got now got a medical driving licence.
PAT PORTER:Okay.
JANET TAYLOR:Which has to be renewed. It did have to be renewed every year. But as of last year, they said I could do it every three years.
PAT PORTER:Right because I know, there's no instant cure or anything, that it's something that's progressive. Okay. And was that fairly straight- I know they were slow getting back to you initially. But the annual thing is that fairly straightforward?
JANET TAYLOR:Yeah it is. I mean, I don't have to apply for it. They obviously know that it's, it's coming up. And they write to me prior at about a month before saying, have you had any changes? Is, you know, anything changed in your diagnosis or not? So I just say if I say no, I mean, I can carry on. And they just give me a new license.
PAT PORTER:That's useful for people listening in that may not even think about that. So it's good to know that's once it's up and running it's fairly straightforward.
JANET TAYLOR:Yes. And I did think the other thing that I never actually understood was that people with MS have very low levels of vitamin D.
PAT PORTER:Aha. So not just redheads. [laughs]
JANET TAYLOR:And I was thinking, I'm outside all the time, why would I have low vitamin D? But she said, my, because obviously they do the blood tests whe they did them, and said they were really low. So had to take a high, very high dose for, I think, three months. And then they did me another test to check that they'd come to the level they should be. And then I just have to take vitamin D all the time now.
PAT PORTER:I might look into this a little bit and have another chat about that, because I'm fair haired and pale skinned. And that's why I made the comment earlier. And I'm 15-20 years taking supplements of vitamin D. And I'm like you I'm always outside I'm gardening and walking about. And I'm going, I'm always outside. So it must be to do with the absorption that we can't absorb the natural vitamin D. So it has to be that reason, because we are outdoors a lot. I'll check it out. We'll, we'll have another chat about that. But I'm aware that the vitamin D, being low on vitamin D causes pain. So when our vitamin D's up, it helps calm the pain down. Is there anything else that you're, any the other supplements? Any medication? Or is it ad hoc when you have a flare up?
JANET TAYLOR:Yeah, I mean, I don't really take any medication as such
PAT PORTER:By choice? Or is it recommended to take some and you choose...
JANET TAYLOR:She didn't say I have to take anything, I mean they do, they do ask me if I take anything. So I do take a multivitamin. So she said that you're doing the right things. And I think another issue with people with MS is digestion.
PAT PORTER:Ah.
JANET TAYLOR:Because you have, not to say it but you have constipation quite a lot. So I have to take, I take flaxseed, so that sort of helps. So I take it with my breakfast in the morning.
PAT PORTER:So it's small habits, small changes, but not enormous changes, did it become a way of life?
JANET TAYLOR:No.
PAT PORTER:Okay, well, that's that's reassuring. Are they - because I know nothing about it- is it something you've got to annually check in with consultants about any changes or if you're maintaining, or do they tell you things like it will get worse in years to come, or life changes and looking after yourself keeps you at the same level. Does it fluctuate or dip or?
JANET TAYLOR:I mean, I do get asked to get, well I get an invite every year to go and see my MS nurse. So she comes to Settle which is handy, and I just discuss with her if I have any changes, anything that's bothering me, and I can always ring because as she said, she said, you know, if you have any problems, just please just ring me. And you know, we can get you in straight away or, you know, we can help you because I've, I've been having a bit of an issue with swallowing food, which is another symptom.
PAT PORTER:Is that fairly new?
JANET TAYLOR:It's just one of those things, unfortunately. But she just said, well, you just have to, it's like being with a baby really, cut your food up![laughs]
PAT PORTER:Chew more, smaller pieces.
JANET TAYLOR:Yeah. And she said, and then if I have any problems, and it gets worse, I can go in, and they will investigate it further for me.
PAT PORTER:Is there anything, any other symptoms, any other ailments with the condition that affects you in your daily life or performing daily tasks, like bathing, self care, that sort of thing, apart from the eating?
JANET TAYLOR:No I don't have any other symptoms. I mean, I do have a problem with balance, which is part of the thing, and I've always been a bit clumsy. So it's [laughs] just one of those things. Hence, I do quite a lot of exercise to help with the balance. So that I don't keep falling over.
PAT PORTER:Can't say I've ever noticed, and I've seen you, spotted you around, walking around town. And you run, you're a runner, I mean, not just, you know, a mile up the road, you're a competitor, you are winning rosettes, and awards and charity runs. It blows my mind how incredible, Wonderwoman, you are. Is that part of like two fingers up to the illness? You're not going to stop me. I'm going to continue running and do what I enjoy best.
JANET TAYLOR:I mean, I think that one of the first thing I said to the nurse was, "Can I still go running? You know, is it a problem?" She said, "No, no, no", she said "the better for you". She said, doing exercises is good. You've got to be, you've got to move. I mean, it's not just people with MS, I think as you get older, you really just have to make the effort and not wallow and feel sorry for yourself. You've just got to get up and do things. And I like to challenge myself and, you know, so I give myself something to aim for, then I will do it, then.
PAT PORTER:I love that, giving yourself a goal. Reaching it, it keeps you going forward. It's a nice habit, a nice way of dealing with things. But not everybody is that way inclined.
JANET TAYLOR:No.
PAT PORTER:We're all very different. So we all handle things differently. So I'm very impressed. Can I ask, if it's not too personal, how family, parents siblings, how do people react? Did they treat you differently? Or if they got used to it now and it's carrying on as normal as Janet? How's that been with the family?
JANET TAYLOR:I think it, they were all quite shocked. And I think they all sort of like felt sorry for me, in a way. And, you know, I don't want pity, you know. I feel fine, you know, I've not changed from who I am or what I am. I'm still me.
PAT PORTER:Absolutely.
JANET TAYLOR:And I don't think they treat me any different now because they all know that I'm fine. And I still go running. And I've not changed anything. But I'm just, I didn't like being pitied.
PAT PORTER:I get that very much. So yeah. But yeah, as time has passed and they saw you're getting on and you're living a wholesome life, and nothing's awfully changed that they, it's become part of the norm now. Good, good I'm pleased.
JANET TAYLOR:I think because my mum was still alive when I got diagnosed. And that she was the first person I rang. Just sat in the car park and I went, ah, she said, "How have you got on?" And then when I told her, she goes,"Oh, you'll be fine. You'll be fine. Your uncle had multiple sclerosis, and he's fine. He used to fall over all the time when he was younger." And I was like, right, okay. [laughs]
PAT PORTER:Very matter of fact. But maybe that's where you get your resilience from, that attitude from your mum might be a quality you have similar to her, and just kind of put it to one side and carry on as normal. Is it hereditary? If it's in the family? Is there a link to that? Or...
JANET TAYLOR:It is, I mean, he was my uncle. But I don't think it's hereditary. I mean, it's just, you know, like, I've got an older sister, I've got a brother. And yeah, nobody else in the family has got anything like that.
PAT PORTER:Luck of the draw unfortunately. It's an invisible disability, unless, you said you're a bit wobbly, but generally, day to day going to work, living your life, doing your racing. It is literally invisible to the passerby or the person that doesn't know. How does an invisible illness affect you or have you ever or thought about it? Or if you're having a flare up, and you just need somebody to have that little bit of patience or support you? Or maybe it hasn't bothered you in the slightest. Have you any thoughts on that? Having an illness that you look normal, though, you've got something quite problematic going on in your life?
JANET TAYLOR:Yeah, I mean, I don't really think about it as such, I just see in the back of my mind that I've got it, but I don't really feel any different. Like I told my boss, I think the other day that I was going to meet my MS nurse, and I needed like, another half an hour off or something.
PAT PORTER:Yeah.
JANET TAYLOR:But he doesn't, you know, he doesn't, he asked me how I got on when I come back, and Is everything okay sort of thing, which was nice, but I wouldn't like, I don't usually broadcast it that I'm going, I just asked him because it was short notice. And I said"Oh, am I okay," because I thought it was the week after? And he said, "No, no, just go, go go."
PAT PORTER:You seem very fortunate, he's a flexible, caring boss, and that makes a big difference actually, and you're valued very much. So it's good to know. Well, I've taken up quite a bit of your time. I'm just going to give you a final question, Janet. Is there any little tips or pointers or anything you can share that might be useful for somebody that's recently diagnosed, or it's new to them, and they're, they have concerns, is there anything, a little nugget that you could share?
JANET TAYLOR:I think you've just got to see the positives in everything. Don't see, like, and start being negative and just thinking, oh, this is my life now, I'm not going to be able to do this. You've just got to, you know, you're only here once, you just got to, you know, be positive. I know, it's hard to say that. But I mean, you just really do. You've just got to think there's always good things about everything. And that can turn it round.
PAT PORTER:Thank you, that's a lovely way of looking at it. And I'm kind of that ilk myself, because you have to get up and function and get on with life and enjoy the small things, and take pleasure in the small things, and have goals and look forward to stuff. And as you say, again, it can't own you. You can't let it just take over your life, and it's just going to be a slippy slope of going downhill. So thank you. That's really a good outlook, and I take heart in that myself, I appreciate hearing another person that has a positive outlook on something that has a hold of us. Thank you very much Janet, it's been lovely talking to you, and maybe we'll have another follow up chat about vitamin D and other multivitamins! [laughs] Who knows? But thank you for your time, appreciate it.
JANET TAYLOR:No problem.
PAT PORTER:Cheers. Bye bye.