Podcast: From adventurer to advocate

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Transcript

[Music starts]

Shehla Ali: I was climbing up the stairs thinking I can't actually get up, and it was just like my mum was having to spoon feed me. Then I'd eventually sort of get up and then take a step and I would just shake and have involuntary movement. I had no control over my body or my senses. It's like my brain was on fire and no one was listening, so it was making me panic even more.

Beth: Hello and welcome to the disability download. Brought to you by pan disability charity Leonard Cheshire. On this podcast we respond to current topics, share stories and open up conversations about disability.

[Music ends]

Beth: Hi everyone and thanks for tuning in, my names Beth and I’m your guest host for this month's episode. Today we’re chatting to Shehla, a solo backpacker, adventurer business owner and drone enthusiast.

Shehla’s life took an unexpected turn when her body abruptly shut down. After undergoing various medical investigations, she was diagnosed with Functional Neurological disorder, commonly known as FND.

Throughout her healing process Shehla discovered the power of connection with others who shared similar experiences. In this episode we delve into Shehla's story of resilience and determination to reclaim her life and the incredible community she has fostered through her online community, about M.E. So, lets dive in!

Beth: Hi, Shehla. Welcome to the Disability Download. Thank you so much for joining us. I thought we'd start by giving the listeners a chance to get to know you. So, if you could just tell us a little bit about yourself?

Shehla: Thank you for having me. OK, elevator pitch. So, I worked in marketing for about just over a decade.

I’d consider myself a bit of a creative. I used to travel the world alone. I’ve reached seven continents. I loved hiking and lived a very active life. I’m also a drone enthusiast. I just fly that around the world and at the peaks as well, and a proud rabbit mum.

Beth: Oh lovely. What is the rabbit called?

Shehla: The rabbit is called Bliss.

Beth: Aw Cute. So, if you're comfortable, I thought maybe we could delve into more about your disability. So, if you could tell us about FND which is functional neurological disorder and maybe what your symptoms were leading up to your diagnosis?

Shehla: Yes. So, in 2019, I'd say I started to feel quite fatigued, and I had low moods. I just finished working in Palestine for a month and I came back, and it was winter and I started to feel quite dizzy a lot. I went to my GP and they were like, yeah, it's just because of your ethnicity. You've got low vitamin D. Your iron's not great.

But apart from that, you're all good and said you're actually quite healthy. Nothing wrong with you. I hadn't really been to my GP or medical practices prior to that, apart from when you got the vaccines when you're younger.

I'd had a few vaccines from the nurse when I travelled to like South American stuff, so I wasn't really aware of even how you called the medical practice. I didn't realise you had to battle at 8:30 in the morning for an appointment. But we'll get onto that.

And I was told that yeah, I'm good and then as we progressed, I was just told that you need CBT. You're not feeling great, you're quite anxious and that's all you need to do.

I was visiting the gym six a week and they were like yeah, just keep keep at it, keep that active lifestyle up and it's great for you. We don't want put you on tablets and I'm like, OK, they're telling me I'll be fine. So I'll be fine.

And then I got to a point where I was going to sleep like 8pm or 9pm and I wasn't able to stay awake any longer and I just thought, oh, maybe, maybe it's me. I'm being a bit lazy. And then lockdown happened, and I started experiencing, panic attacks.

I would randomly drop on the floor and I don't know why. I would black out and I thought right, maybe it's because I'm not adjusting to lockdown. I just need to try harder, so I tried exercising. I was lifting weights, I tried running, I tried all sorts of stuff. And it just wasn't happening. I had a contract that had a global team, so I was constantly awake. I remember moving a cell on a spreadsheet was like climbing Everest. I just didn't understand how to do that for some reason I thought, Oh my God, I'm just so incompetent all of a sudden. Like, why is that happening?

And I had drop attacks. My muscles started to spasm. I had involuntary movements. I couldn’t move parts of my body. I was bed bound. My body was just deteriorating, went to A&E and they were like you're making it up. It's in your head. This is my first time visiting A&E, and I was like, I thought they are supposed to help you. 

And then we went again because my parents, thought I was dying and they were like, yeah. No. What do you want us to do? Wave a magic wand round you. It's all in your head. It's anxiety and just stop making it up. And I was like, I'm really not making this up because as someone who's grown up fairly healthy and active and has travelled around the world, why would I want to be sick all of a sudden? I don't know many people who want to be sick and bedridden because it didn't do much for me apart from destroying my mental health. 

So I had all these varied symptoms. Sometimes they would change and then other days I'd be like, oh, I've got my energy back. I'll go for a run and then I wouldn't be able to walk for four or five days.

Like, I slept in the living room for about 5-6 months because I couldn't actually make it up the stairs. I was just like, what's going on? I've got to fix this. And you know, I fought for an MRI scan. I got that and that was just a horrible experience in itself, because I'm claustrophobic. I was just like, I've got to go into this machine and they put headphones on a blindfold on.

And it was just for my brain and spine, and it was horrible. The one that I had was about half an hour, but I was there for, like, an hour cause I couldn't get into the machine. I just kept shaking. They were like, come on, come on. We’ve got another appointment.

And I just, I couldn't do it. I was like, you want me to go into this machine alone? Have you seen the size of it? They were like, yeah, if you don't go in, then you know it's another year's wait. And I was like, OK, get in there then. 

So yeah, it was horrible. And they said that you're fine. Your results say that you're fine. You've got something called FND. This was from a neurologist. And he was like, it's all in your head.

It's up to you how badly you want to get better. Get back into whatever you were doing before and you'll be fine in a few weeks. So, everyone else heard that and they were like go on, get out there. Get back into your running. And I was doing that and just getting up and walking, I would lose my breath and I'd drop onto the floor. So something wasn't right still.

I was climbing up the stairs thinking I can't actually get up, and it was just like my mum was having to spoon feed me. Then I'd eventually sort of get up and then take a step and I would just shake and have involuntary movement. I had no control over my body or my senses. It's like my brain was on fire and no one was listening, so it was making me panic even more, because I was suppressing my emotions.

I was around people who were like, don't tell anyone what's wrong with you. Oh, my God. This is so embarrassing. There wasn’t that much support. They were a varied group of symptoms that I had. 

There wasn't really a pathway like you've got this this and this. Therefore, it's this. It was just like one day I would have random migraines. You know, I would feel like I couldn't open my eyes and I’d have sensory problems. 

I would just drop and not be able to get up for 22 hours to then be told that its psychological and I’m making it up wasn’t the best experience. Then after a while I was diagnosed with fibromyalgia and M.E as well.

Beth: Did you feel like you received any support on any level or is that something that you had to seek out yourself?

Shehla: At the start, no. The stuff that I was told by my GP was like, you're panicking. Why do you keep calling? And they were quite aggressive. And I was just like oh, maybe I shouldn't ring and ask for help. 

Another GP was like, well, you’ve got good skin and good hair. So, why are you complaining. And I was like, what's that got to do with me dropping on the floor? 

Like it makes sense. And I was like, I can't believe some of you have got through Med school because if they can't see it, it's almost like it's not happening. 

I would rather have had specialists or so-called specialists say, you know what? We don't know what's wrong with you. As opposed to, you're making it up, trying to convince me that I'm making something up, which was very much not made up. I then moved to a different practice because I joined a Facebook group. I typed in FND and was like, oh, there’s two or three groups on here.

They were really supportive because you could just put in a question there and someone in the group would get back to you. So, for example: a tense machine, is that good for your back?

Has anyone tried an elimination diet? There would always be someone there to sort of answer the question, because they've probably tried it and they're the ones who are, sort of fighting to get better as opposed to GP's who are just like, we don’t know what it is. 

So, I got support from them and you know, at a point where my mental health was really bad and I was just like, I can’t do this anymore, there was always someone there going, do you want to talk? And there'd be groups and video calls that you could join. 

So, I felt like I wasn't alone when I started joining those groups and those conversations and then someone said, change your medical practice and I was like, oh, you can do that? They were like, yeah of course. Change your medical practice, get a second opinion. So, I did that and the new medical practice were like, we don’t know what's wrong with you, but pain is pain. And I just cried my eyes out. I was sat with my laptop thinking I was going to have to prove how sick I was. 

I thought I was going to have to go through a google doc with all my symptoms because I’d often forget. I’d recorded some of my symptoms, so I was like, I’m going to have to show this and the GP was like, well, if somethings wrong, its wrong. Pain is pain. I’ll refer you to all these specialists. 

I was like, you believe me? Oh my god, this is amazing. He said, I’m just doing my job. I was like, no, you don’t understand, you don’t know what this means to me, to be believed. That was amazing. Even though we shouldn’t have to congratulate people for doing their jobs like that. 

I was then referred to a neurophysiology, physio, neuro psychotherapy and the chronic fatigue clinic and that’s where I got the actual support, but I had to wait three years for that 

Beth: Yes, that’s a long time, isn't it? Especially when, you know, you're in pain and you’re also dropping to the floor, which I imagine could be really dangerous, especially if you're dropping in the wrong place. So just for our listeners, could you maybe describe a bit more about functional neurological disorder and what it entails? 

Shehla: Yeah, there's a lot of misconceptions around it, and to be honest, I never heard of it until I was diagnosed. So, they were like, you’ve got FND. I was like, what's that? And they were like, go onto this website. And I was like, okay, so it’s down to me.  

So FND stands for functional neurological disorder. And they say, well, specialists say it's your brain and nervous system that are disconnected and your brain is sending the wrong signals to your body in your nervous system. Hence why you get symptoms that mimic those of a brain tumor, MS and Parkinson's disease, that could be just random symptoms. 

That's why there probably isn't a clear pathway and mine would mimic those of a brain tumor. So every time I googled my symptoms, it was you're going to die. And I was like, OK, that's that then. 

I’d go into non epileptic seizures, involuntary movements, there were days where I just couldn't sit down because my body would just get back up and I just thought, what is going on here? 

I wouldn't be able to move my body for like two or three days. I had to have help with eating food. I had to have a lot of liquid and my hair stopped growing, my skin turned really bad. I was just weak. I had problems with my speech tremors, migraines, everyday sensory problems and a lot of fatigue. 

Beth: Going back to the things we were talking about before, you know, with the doctors and your journey towards diagnosis. Do you feel like you've got more of community now of people that are going through the same thing? And if so, whats that like?  

Shehla: Yeah, I think there's good and bad in everything. So, with social media, anyone and everyone can raise their voice. Facebook communities and groups or Twitter. 

Though there were a lot of people who were sharing their symptoms and their experiences, and it's quite common for people not to get a diagnosis straight away, I think I've only spoken to two people who got their diagnosis pretty much within two weeks. Everyone else has had to sort of, go on a journey and a bit of a battle for around a couple of years. 

And people like Avril Lavigne, Lady Gaga, Justin Bieber and Selma Blair, they've all got chronic illnesses, and they talk about people leaving them, not having much support, not being able to get a diagnosis, and I think, they are celebrities in America, quite well known, got all the money in the world and if they're not getting the support, what hope has anyone else got and that made me a bit more passionate about speaking out, eventually when I  accepted the illness and the symptoms. And finding that community.  

However, sometimes when you speak about recovery, not everybody wants to hear it because they're not ready for it. I guess there's sympathy because I was there at one point. I wasn't accepting my illness. So, if someone was to tell me that, “do you Tai chi and you’ll recover”, or you know, “I’m better now”, I wasn't ready to accept that because I was bed bound and I was like, how could you possibly recover from this when I can’t move. 

There is that sort of, you've got to pick and choose where you share your energy and at the start there were lots of groups I was part of and engaging with, because that’s all I had.  

But I’ve got a smaller group that I started with just four of us in and we’re all from the same city. So, we can talk about which neurologists we're seeing, what our experiences are like, but then we kind of leave each other to it and we're on similar experiences where everyone sort of does still work or work part time. There isn't a kind of, well, I'm working. You're not, or you're able to do this? I'm not. That makes me feel less alone. And if you are having a bad day or something, you just put it in the group and someone will be there. Whereas if you do that with a larger group, there is a chance that although you'll get a lot of support, you might just get one or two, who are like, hang on a minute. I wish I was better or sharing their opinions, and that's not always helpful I found. 

Beth: So, you mentioned recovery, what's recovery looking like for you right now? 

Shehla: So it's varied. I got to a point where I recovered about 70%. And that lasted maybe a month, and I got a bit too excited. And then I was back to being bed bound for five or six days.  

I would say recovery has been a mental and physical challenge. I wasn't accepting it at the start, I was on the phone to the crisis helpline for four months. Just saying I can't do this anymore. Whereas once I started to accept it, I would say that's when my recovery journey began in January or February 2021. I was like, right? I'm sick and actually saying it to someone else and saying this is what's happening. 

That was, I think the turning point for me because I was accepting it rather than suppressing it. And then I started raising awareness myself, sort of investigating the best things to help me with chronic pain. What's going to help me get up, supplements and stuff like that. 

And that's when I started the new business About M.E because I thought the skill set that I have and the experience I have, I can use it to raise awareness. 

Even when I am bedbound or I am fatigued, I can still open up my laptop from being in bed and sort of write my book, edit the podcast, upload a video to TikTok, anything that isn't like high energy levels, and I think using my voice to kind of share my experience and other peoples as well, because you can learn a lot from the chronic illness community, things like using a weighted blanket. I would never have known what one of those was until people in the group were like, “anyone got a weighted blanket?” “It helps me with this, it helps me with that.” and I was like, oh okay, no one else is going to talk to you about that. 

So, I feel like it's helped me recover by speaking to other people and their experiences, but also sometimes I do want to forget about the illness which is quite hard because pretty much nearly everything I do is sort of attached to it. Even the books that I read a lot of are self-development and brain development. Things like, how illnesses have changed over time, how women are diagnosed and women of colour. 

So, there's a lot of research I do, but then there's times when I just want get up and get a sunset with my drone and I have to think locally as opposed to going to the Peak District for three hours and hiking. The recovery process is sort of alternative living and I have to say I'm still learning. Things like, even though the weather's nice at the moment, I just think Oh my God, I could be doing this or you know, I'm missing out. I'm not making the most of it, but if I overdo it, 

I then relapse and flare up. And then I pay for it. So yeah, I'm still learning. 

Beth: So, you used to do a lot of solo travel. Is that kind of thing off the cards for now? Are you hopefully going to be looking at that in the future or just taking it day by day? 

Shehla: So, it was something I missed and sort of like, had to mourn that part of my life. I did travel a lot in my twenties, like a lot, I'd spent months away working remotely. And then my last trip was to Palestine in 2019. And then obviously we had the pandemic and the locked down and we weren't allowed to go anywhere. But last year I went to Switzerland for five days as a milestone trip. I just thought, where can I go that's not too far away. 

And I picked Switzerland. I took my drone. I took my cameras. And I just thought, I'm just going to pick one thing that I want to do. I'm not going to do the old Shehla of I need to do everything and I'll sleep when I come back. I learned a lot about how my body adapts and I was wiped out for three weeks after. But I learned to travel in a sort of slower way. Rather than everything has to be fast. 

I had to consider how far away from the airport I was staying, where I'm going to eat and the day trip I went on to look at the glaciers and mountains. That was like the main activity that I would be doing and I had to schedule it in mid-week. So as soon as I got off the plane, I could recover and then I had a few days before I got on the plain again to come home to recover.  

There was a lot of sitting in coffee shops and taking it all in. So that was the trick that I think helped me think, OK, I'm not going to do as much, but I know I can still do it. I just pay for it for like a month after so yeah, now I've done that I don't miss out. I don't miss the travel aspects as much because I did so much when I was healthy which I'm very grateful for. Whereas now it's more like. Where can I go that's local and enjoyable, but kind of still gives me that buzz. 

Beth: Can you tell me about all the positive things you're doing right now? If you could explain a little bit more about your website, what that entails and then your podcast, A Spoonful of Recovery? 

Shehla: Yes, so the website About M.E .group, I created to share the sort of tools and products that have helped me. So, the film rolling tents, machine heat patches, migraine patches that help manage the chronic pain, it's not going to cure the illnesses, well, I don't know, maybe it will, but I did also do some research around other people who have similar symptoms. 

What are they using? How often? How much would they spend? And then I use that research to sort of create the products and they're usually the ones that I've used myself as well. And then I've got a clothing line, because I travelled a lot I've used those photographs to create the clothing line. I’d also use sarcastic comments that have been said to me, like, “Have you tried staying positive?” And I put “I tried staying positive, still chronically ill.” And “Have you tried turmeric lattes?” “Still chronically ill” so you know that's just a reflection of my personality and a lot of people in the chronic illness community will be able to relate to those kinds of things. 

Like yeah, the positives are really getting rid of the back pain, totally. So there's that. And then I've got the podcast A Spoonful of Recovery.  

I started that when I was bedbound just speaking into my phone saying hi, my name is Shehla and I've got FND, fibro and M.E. It's been a year and I'm accepting it and then just other episodes of like oh I'd love to be able to travel again. I'd love to be able to do certain things. Then after six episodes, I sort of left it and then focused on the website. And I sort of forgot about it.  

Then, about six episodes later, I thought I should bring someone on. So, I brought other guests on to share their journey as well as specialists. I just thought about the things that I needed to hear when I first became sick and also alternative living. How are other people coping? What have they done? How easy is it to find a relationship when you are sick? Do you tell them straight away? Do people travel? What's everyone doing to sort of survive this and get through it?  

I've spoken to people who are housebound, and they might be studying or they might just say that they accept that and that's how they get through the rest of their journey. And I think that's important to highlight those voices, because I had a lot of unsolicited advice, like you need to get better. Your holidays are over or just be happy. Be positive and it's like that's so toxic and negative towards the recovery journey.  

So yeah, the podcast is there just to highlight those stories. I've got up to fifty five episodes and the more I speak to people the more it’s like, oh I can find someone to talk about this or we can try and learn more about XYZ so it sort of helped me as well thinking actually I'm not alone and some people have just said simple things like, how should someone be there for you as a carer or a friend. What can they do? So that's helped.  

I’m also writing a book. I'm editing at the moment, which is a bit of a challenge, but you can tell I'm creative because everything's like turned into, components of the illness. And I'm also developing an app to help with the managing the symptoms and trigger points.  

Beth: And just getting on to that, if you had a message for other people diagnosed with FND, what would it be? 

Shehla: I would say it's your journey and you take it one day at a time, even one hour at a time and it's a lot about acceptance as well. I was in denial for nearly a year. I don't want this illness. People like me don't get sick. I can't be sick, but as soon as I started to sort of say it out loud and think, OK, what are my triggers? How can I manage who I'm around? 

I can be very isolating, but you know, just know that you're not on your own. If it's a movie marathon, you need to do that day to get through, then that is what you need to do to get through. There's no shame in it, and there's people who might be able to get up and recover quicker, but that doesn't mean that you are failing. 

Some people you know might only be able to do a certain amount of activity, whether that's getting up and showering, whether that's getting up and making yourself food, just know that it's what works for you, not everyone else.  

I still fall into the comparison battle and think, oh well, this person's is doing this and I can only run for seven minutes, when I used to be able to do five to nine km, but that's me accepting that I can do XYZ and there's an alternative way of living and it doesn't have to be a bad one. 

Beth: Amazing. So, to wrap up, where can people find you? What are your social media places where people can see more of you?  

Shehla: Well, so the best thing would be to go on www.aboutme.group. You'll be able to find my social media on there. 

You'll find me on there, just rambling along. I’m not always that useful, but you know, I do get involved in certain medical conversations. 

Beth: Well, we'll drop all the links in the show notes so people can get on to it. I just want to say thank you so much. It's just been really great to talk to you. 

Shehla: Thank you for having me. 

Beth: And that wraps up today's episode! I want to say a big thank you to our guest, Shehla, for joining us and sharing her journey with Functional Neurological Disorder (FND). We're grateful for the insights you've provided and the awareness you're raising for FND. 

We’d love to know what you think. Get in touch by emailing us at disabilitydownload@leonardcheshire.org or contacting us on Twitter or Instagram @LeonardCheshire. And if there’s a guest you really want to hear, reach out and let us know! And don’t forget to like, share and subscribe to the podcast! Thanks for listening. I’m Beth and this has been The Disability Download.