13 - AJ - "Finding My Sparkle"

Episode 13 of the Long Covid Podcast is a conversation with AJ who has been living with Post Concussion Syndrome for over 3 years, following a brain injury in 2018. Similar to many suffering with Long Covid, AJ lived a very full and active life until her accident when everything changed in a moment.

Since then, she has had to adjust her expectations and the way she approaches everything as well as coping with many varying and unpredictable symptoms.

In this episode we talk about some of the ways that she has learned to manage her symptoms (some of which are surprisingly similar to Long Covid), strategies she has used to help as well as how she has mentally managed to be so tough and remain positive.

AJ is so inspiring to all of us and hopefully some of what she talks about might be helpful to you as well.


Useful links:
Website: https://findingmysparkle.co.uk/

Instagram: https://www.instagram.com/findingmysparkleaj

YouTube: https://www.youtube.com/c/findingmysparkle

Insight Timer app: https://insighttimer.com/en-gb

I especially like listening to Bethany Auriel-Hagan as she has a really soothing voice. https://insighttimer.com/crystaltreeroad

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The Long Covid Podcast is self-produced & self funded. If you enjoy what you hear and are able to, please Buy me a coffee or purchase a mug to help cov

For more information about Long Covid Breathing courses & workshops, please check out LongCovidBreathing.com

(music credit - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter  
Welcome to the long COVID podcast with me. Jackie Baxter, I am really excited to bring you today's episode. Please do check out the links in the show notes where you can find the podcast, website, social media and support group, as well as a link to buy me a coffee if you are able, you should not rely on any medical information contained in this podcast and related materials in making medical health related or other decisions, please do consult a doctor or other health professional. I love to hear from you, if you've got any suggestions or feedback or just want to say hey, then please do get in touch. I really hope you enjoy this episode. So here we go.

Jackie Baxter  
Welcome to this episode of the podcast today. I'm very excited to be chatting to AJ, and I think I will just let her introduce herself. Hi everyone.

AJ  
I'm AJ. I'm a brain injury warrior from Forfar in North East of Scotland, and I'm so glad to be on the podcast today. Thank you for having me along. I know that with having my brain injury, it's very different in terms of an illness or whatever, from long COVID. But I hope that what I've got to share can help your listeners as well. Absolutely

Jackie Baxter  
you've obviously been dealing with this for longer than long COVID has even existed as well. So I think that kind of length of time may help as well. So can you explain a little bit about your accident and what happened, maybe, and how it's impacted you. Okay,

AJ  
so it was march 2018 I don't remember the accident, but I know it was when the beast from the east was around. We had all that really heavy snow. I was out sledging with family, and the last thing I remember is watching one of my nephews go down the hill on a sled, but he was standing up. And I remember thinking, Oh, that looks quite cool. I'll try that. And then I don't remember much after that, but the sledge, when I was standing on it, it twisted round, and I fell backwards on my head, landed on my head. I did go to hospital, but I don't remember much in that period after it was about five days after the accident, I woke up one day, I was told in hospital I had a concussion, a whiplash and a torn eardrum, but just to go home, you'll maybe need to rest for 48 hours, but you're going to be okay. So then it was five days after the accident, I woke up, and my speech was really, really slow, my movements were really slow, and there was a lot that just something. I just knew that something was really wrong, but I didn't know exactly what it was. So JP, he said you would get me an appointment with the doctor, and even just listening to him say something along the lines of your appointments between, say, nine and 10. And I'm like, but I don't understand that, when is my appointment? And it was something really, probably trivial that I just couldn't put my finger on but it kind of went from living life at like, 100 miles an hour, not having to think about your energy, it was just you could do whatever you wanted to to then suddenly life was very, very different. It just felt like even walking about outside, going to the surgery, just thinking something's wrong, it just felt like the world was moving so fast, and I just couldn't keep up with it. And then when I was actually sat in the waiting room, just waiting to be taken from what I remember, I thought it was a TV that was on, but now, having gone back, it was a radio, but it just seemed like everything was so, so loud, and I just I couldn't tolerate it. So from there, I was diagnosed with a brain injury post concussion syndrome, which is quite unusual for somebody to be diagnosed quite so early on. Usually you would get that diagnosis if you're not better within about six months. But I think the doctor must have known that, in my case, it wasn't going to be a quick recovery.

Jackie Baxter  
Yeah, it's horrific. Going from that feeling of everything's fine, you feel almost invincible, don't you, and the thought of something not being normal, you just can't even imagine that, to this point where everything is suddenly completely different, yeah, yeah. And it's like, it's almost like two different use, isn't it? Yeah, I totally get that. Yeah.

Speaker 1  
There was one other brain injury warrior that I got to know, and she described it as like it was having an alien in your head. So sometimes it would feel like I had somebody's body, because it just didn't move the way that I used to move. And then other times I would think that there was somebody's brain inside my head, because the emotions and the way that it was thinking everything was just so, so so different. I used to be that classic Taipei person, so motivated, so driven, and then to have that all just literally turned on its head. It's like, it's like a version too. You suddenly you just become this very different person that you really struggle to understand yourself. Yeah,

Jackie Baxter  
that sounds really scary. It's almost like dissociation kind of thing. Where you're struggling to understand things must be really scary.

Speaker 1  
Yeah, for sure, it was. I just from that point on, there was a lot that I just didn't understand. It would have to tell people, slow down. You're talking too fast. I can't understand you. But it seemed as though my speech went back to as if it was at primary school. So I could only speak in two syllable words. And if anybody used a word that was more than two syllables, I just didn't understand and it was constantly telling people, slow down, I don't understand you. And then with my speech not being great, then either, that was a bit of a battle. But I suppose it's just

Jackie Baxter  
part of it. Yeah, absolutely. It's like almost having to relearn things, yeah, for sure.

Speaker 1  
So things like the vocabulary. I mean, the thing with the speech like that's got a lot better, but there's still a lot of times where I'm thinking, there's words in my head, but I don't know how to say them. You might say a whole sentence, but it's like you're talking dyslexic, because all the words are in a very different order. Yeah,

Jackie Baxter  
I think anybody hearing you without knowing would I not really realize so that is something that has improved quite a lot. Then, yeah,

Speaker 1  
yeah, for sure, I do still have a lot of difficulties, but speech was one of the things that did improve fairly quickly. It just needed to be quite patient,

Jackie Baxter  
yeah, and I think certainly I am terrible with being patient at things. I want things now. Yeah, yeah. Must have been a struggle.

Speaker 1  
Yeah. I was. I had this thing where I think when I got diagnosed, I don't think that I really understood the gravity of what I was dealing with in

Jackie Baxter  
terms of sort of treatment at the time, sounds like maybe you did have quite a lot of, I'm not sure, support the right word, sort of treatment and stuff at the time. Yeah,

Speaker 1  
initially there wasn't any treatment. Every time I went to see the doctor, he would sign me off for two weeks at a time, and in my head, I was thinking, okay, so if he's signing me off for two weeks, then that means I'm going to be okay in two weeks. And I just don't think that I understood how serious the situation was. So I was that classic type a person that was very motivated, very driven, and I thought, brain injury, whatever I can deal with that. I'm physically strong, I'm mentally strong, I'm going to ace this. And I literally, I tried to hack my way through my brain injury recovery, which, looking back, I think, no, it definitely had the right attitude, but I suppose it wasn't really the right sort of personality to be trying to throw myself into recovery. And for the first three months, every time the doctor would sign me off, I would just think of that as being like, that's the date that I'm going to be better. And then one time, I think JP went to the surgery to pick up my fit note, and my doctor had signed me off for a month. I remember getting really angry and just thinking, why would you do that? Why would you sign me off for a month? I'm going to be fine. And I think it was just kind of a bit initially, I was oblivious to to the situation, the very difficult situation that was in. And so for that first three months, I didn't get any help at all. There was no medical support. It was just like, Okay, so just give it time. Just give it patience. You know, you just need to give it time. And then it was at three months down the line. I mean, I knew that there was support out there for people with brain injury, but it seemed to be very much a postcode lottery. So I joined a UK Facebook group for people that have post concussion syndrome, and I was saying that there was medical support in other places. But then I was thinking, Well, why am I not getting that, you know? And it was so, so frustrating thinking I don't feel like I'm getting any better, and nobody's helping me here. So then it was at three months into the recovery that was when things, I suppose, took a turn for the worst in the sense that I developed new symptoms. I was already finding it hard to walk. I was very unbalanced, walking into walls in the flat. People had encouraged me to get a walking stick because they didn't want me to fall over and hit my head again. But then I was just like, well, I don't need this. And it was all these things I would just fight against them. But then I noticed very, very quickly, as I was trying to walk, I was stubborn my toes when I was walking, and I just thought, This doesn't feel right. And then a week later, it went from stubborn my toes to literally dragging my feet along the ground when I was walking. And I was just thinking, there's something not right at all. And so when I saw the doctor again. He did various tests, and at that point, that was when I got referred to rehabilitation medicine. So by the time the referral got through, I think it was about five months till I actually got treatment. So that was where I started physiotherapy to help me walk, learn to walk again properly, which I'm not there yet. I still need crutches, but, you know, there's been a lot of improvements since then. And then I also had occupational therapy, which helped me with things around the home. So I got a bath board to help me when I'm going in and out of the shower, so don't have to physically try and hold onto the wall and climb in. I just sit. And then I got a. Church and stool as well, just to help me in the kitchen, if I want to do the dishes, then at least I'm not standing and using all of my energy to stay standing up. But yeah, so for the first three months, I was so frustrated because I knew there was help out there, but I just thought, Why am I not getting it? It just felt medically like nobody was trying to help me, and it was just being told the same thing by the same doctor over and over again, and I guess I don't know what the policies are within the NHS, but I suspect that maybe it's a case that most people that get concussion do recover quite quickly. So I was one of the smaller percentage of people that have longer concussion symptoms. So maybe there was an expectation that most people would be fine, and they maybe just want to give it time, and then if, after a certain amount of time, you're still not better, then they would look at helping you. I mean, I don't know that's the case for sure, but certainly in my case, that's what it felt like to me. Yeah,

Jackie Baxter  
I think that's something that certainly a lot of people with long COVID can relate to, the postcode lottery this medical community just kind of not knowing what to do. Certainly, some GPs have tried to fob people off because they don't know. And then some have actually just come out and said, We don't know, which, in some ways, is more helpful. I mean, it's frustrating for sure,

Speaker 1  
yeah, and I think that's it. Even with brain injury rehabilitation, things are evolving all the time, and so there are different treatments available, but with long COVID, it's where we now. It's over a year and a half, but it is still relatively new in terms of a medical condition that it just seemed to come out of nowhere. And unfortunately, there's an awful lot of people with what might seem like their lives are on hold because you don't have answers. You don't have anybody that can say, Okay, well, if you do this, this and this, then you'll be better. And I mean, I can only imagine, from my own experience, from my brain injury recovery, I can only imagine how difficult it must be for you and your listeners. Yeah,

Jackie Baxter  
definitely. And exactly like you just said, the not knowing what to do if I do that, will it help? If I don't do that, will it help? And you just don't know, so you're stumbling around in the dark, almost trying to work it out. And it sounds like there's quite a lot of similarities there.

Speaker 1  
Yeah, that's what I found anyway, where people maybe have a different brain injury or a different health condition. Ever since I was diagnosed with my brain injury, I feel like it's opened up a whole new world to people that have disabilities. And when you look back and you think how previously, some shops might have what they called a purple hour so for one hour a week, they would do things like dim the lighting and turn the music much quieter in the shops. And you just think one hour a week just isn't enough, that that was kind of what you were given. And then, in a way, since the pandemic, there has been a lot, I think, of more understanding of what people with different disabilities need. But also I feel as though opening my eyes to this whole new world of disabilities, there are things about other disabilities that I might not understand, but what I find is there's so much crossover in terms of life challenges, and it feels like a lot of people are going through the same thing. So

Jackie Baxter  
you said that your speech improved. Have other things improved or changed over time? A lot of people in the medical

Speaker 1  
community used to see that once you've hit two years of your brain injury recovery, then that's as far as you're going to go. But then there's new research that's come out that neuroplasticity, you can make improvements years down the line. So I always do have that hope that things will get better. And things when I look back, I could look back over months and I think, yeah, okay, that's improved a little, that's improved a little, but life is still very difficult. And then last year, I had an episode where one of the biggest symptoms that affects me is my brain has been hypersensitive. So the first one that was very apparent was hyperacusis, which is sensitivity to noise, but I also get sensitivity to any sort of sensory thing that changes. So if the light comes on and off. If I get a touch like a brush on my shoulder or something like that that I don't anticipate, or any unexpected noise, then for what most people would be able to deal with those changes, I think I have a lower threshold for that. So I began to call it pinging, but I also call it a reflex reaction. So anything sensory that changes that I don't expect. It won't happen all the time. It depends how my brain is at that given moment, but almost like a reflex reaction, something unexpected can happen, and my arms or my legs might just fling up into the air, which I call pinging limbs, because that's just what it feels like to me. They just rise of their own accord. And so last summer, I had an episode where it was just happening constantly to every single little change, and I didn't realize, because it felt so bad, I didn't recognize it as being a severe version of what I already deal with. It felt so so very different. And at that point, I did find that one quite scary. Especially being in the back of an ambulance. And when the paramedic was talking to me, he was behind me, but he had to then come and sit by my side so I could see him speaking. Because every time he would try and talk to me, just the sound of his voice, my legs were strapped in on the stretch out, but then I would, I mean, you couldn't force your body, you couldn't make your body do this. It would just go from lying down to be bolt upright, lightning fast. And so I was in hospital overnight then, and I just assumed that it would just be a one off. I didn't know what it was, but the neurologist that saw me at the time suspected it might be migraine or it might be something to do with original brain injury. We don't know, but my JPS theory is that the brain injury has triggered some kind of movement disorder. So in that respect, I'm waiting. There's a 60 week waiting list to see neurology, so it's such a long time. So when I did phone up to chase up the appointment, at that time, I'd been on the list for 48 weeks, so I just thought, okay, so we just have to be patient here, and I'm hoping that it will be into the new year, they'll do some tests, and I'm really, really hopeful that they might find a drug that can help to calm down the neurotransmitters in my brain, because I'm on two medications for that at the moment, but they're not making it go away, and that's one of the things, being hypersensitive to sensory issues, sensory stimulus. It just makes things very, very difficult in terms of how many people I can be around at once, the type of environment that I go to, the brain's not happy. And I have these episodes where it's not just happening now and then, it's happening a lot. It's just something that's become part of my normality, in terms of that's just what life is like for me, but I do hope that there may be something that can help me in the future. It is just, you know, trying to be patient,

Jackie Baxter  
and it is evolving day by day as well, isn't it, in terms of research and or even, not even that, maybe just finding something that works for you. We'll be right back. I'm interrupting myself for a second to tell you about long COVID breathing. The Fabulous Vickie Jones and I have teamed up to bring you long COVID breathing. We are both passionate about sharing our expertise and experience of the breath and how incredibly helpful that can be with long COVID. We've worked together to develop a course that is specifically tailored to those with long COVID. It's a six week course with 12 sessions, all delivered online. The community feel and learning that we're all sharing is such a joy to find out more information and to sign up for our courses, workshops and other shorter sessions. Please check out the link below long covidbreathing.com or email long covidbreathing@gmail.com to start your breathing journey with us. So

Speaker 1  
yes, yeah, for sure, yeah. And sometimes, when I'm having these episodes, JP, sometimes has to, like, because when it happens, if it's bad, then I literally like, trying to make intentional movement is very difficult, so trying to get me through to the bed is very, very difficult, because it's like my limbs just forget what it is that they need to do to move, intentional movement so hard. But then at the same time, they'll have, they'll have my arms and legs just pinging up their own card. And yeah, it's one of those weird situations that, unfortunately, it showed up in a smaller version not long after my brain injury. But certainly, since that's well over a year now, it's something that's just become part of my daily life that I just have to try and deal with. I mean, you touched

Jackie Baxter  
on it a little bit earlier, the sort of unpredictability of it. You don't know how you're going to react day to day, so you'll have a good day, and then you'll have a bad day, and you don't necessarily know what's going to cause that, or what could trigger it. And how do you deal with that sort of unpredictability. First of

Speaker 1  
all, I think I have to tell a lot of people, my friends and family know, generally, that when it comes to making plans, if there's something that I really, really want to be there for, then I have to put a lot of planning in, a lot of pacing, a lot of really trying to plan my life around being able to be well enough to be at that thing. You know, I tell people when I show up for it, I don't show up for anything unless I really, really want to be there, because it's just there's so many things that you have to learn to say no to things for the benefit of your own health. And I think initially that if I don't really think that that gets better as time goes on, I still find that massively frustrating, having to just cancel plans. But my friends and family are understanding of that. And you know, I tell people in advance that, you know, if I have to cancel, you mean, you know yourself I had to cancel the recording of this podcast the first time around. So one of the things is definitely telling people being realistic with your expectations, as well being open to changing plans because something might just not work for you on that day, and even if it's something that you really, really want to do, if your health is telling you otherwise, you don't have a choice. And unfortunately, you can't keep powering through. You just don't have that choice. So also, I think it's good for me to keep a flexible schedule. When I spoke earlier about being that type. Personality and thinking, Well, I can hack my way through my brain injury recovery, and even then, I just don't think that I realized the gravity of what I was dealing with. So I remember at one point, I had a period of time with my occupational therapist where she said, for a week, write down every single little task that you do, and then write down after how it made you feel, you know, did it increase your symptoms? Was it okay? Did it make things worse or any better? And after a week being presented with this list that had written, you almost begin to see some sort of patterns. And one thing that I thought I could do was I got this massive bit of paper and all the days in the week, and it was like morning was things that would stimulate the brain, thing that might help the brain recover, and then in the afternoon, it would just things on there that would be nice and calming for the brain. But I, literally, I tried to stick to the schedule. I gave myself a massive timetable that just, I think over time, I've just realized that it's okay to not feel the need to be that way, because I know that it just didn't work for me. And I think what I was actually doing then was by trying to stick to a schedule, I was setting myself up to fail because I always felt I'm not good enough, because I can't do that thing, or I have to cancel that, or, you know, you have this feeling that you just I thanked you for a while. You just don't appreciate your own self worth when your life is massively changed like that, and you realize that you can't be that person that you used to be. You know, that person is still there. It's still with you. And obviously, as humans, we evolve anyway. But when you're hit with something, for you, it's long COVID. For me, it was my brain injury, life just turns upside down in an instant, and you have the struggle where you're trying to get back to the person that used to be. And for me, this schedule just wasn't working, and I had to say, It's okay to be more flexible with that. And so at the start of the week, I'll write down a list of tasks, of things that I would like to achieve, but I don't put them into a this has to be done on this day and that day that just really doesn't work for me. And then lastly, on that subject, I would just say, Just treat yourself with kindness. You know it's okay if you're not achieving XYZ, if you have days where you have to spend the whole day in bed, or it might go on for days or even weeks, then it's okay to not feel that you have to do all these things, kindness for yourself goes a long way, because I think it is so hard when your life does change in an instant and you don't know where your future is going, and you don't know if you'll get back that person that you used to be. So I think if you could just be kind to yourself, that would help a long way. I think we're set

Jackie Baxter  
up to put pressure on ourselves and to blame ourselves for everything, aren't we? And it doesn't help. It makes things worse when you start thinking those things. I think, yeah, for sure. And the pressure actually can cause relapses, new symptoms all sorts. Yeah. I mean, this turning your life upside down, or having had your life turned upside down, it's not something that you did mentally, is so hard, isn't it, and the unknown, especially if you've previously been healthy and active, and how do you mentally deal with that and try to stay positive? It's a struggle.

Speaker 1  
And I think a lot of people know me for my positivity, my positive mental attitude, but it's not that every day is like that. I just think that before I had my accident, I was very driven, very motivated. I you know, could pack a lot into my life, but then when your life changes and your health changes very, very quickly, you're then I'd imagine you're in a similar situation as well, but you just don't have the same amount of energy. It literally is like you've maybe got half, or some days, it feels like a quarter of the energy that you used to have, and it is just coming down to, like, being really kind to yourself initially, when I got my brain injury, I've said that already, I didn't know, I didn't appreciate that it was going to be such a long journey. And I suppose you and a lot of your listeners will relate to this as well, in terms of you just don't have a point. You know that your life from before your health changed, was very, very different, but you're almost I remember being stuck in this place where I could accept that my life had changed, and I'd spent so long chasing trying to get back that old life. And after seven months, JP and I going to be on holiday up north and on the way back, sitting in the car. And it was almost instantly, I was just overcome with this feeling of what I forgot to be excited about. You know, I used to come back from holiday so excited about things I wanted to do with my business, and it just felt like my whole world revolved around trying to get better, trying to get back the old me, and learning to actually accept that this part of you in your past. It's everything that you achieved before. It's still always there, but being in that limbo where you think, Okay, I accept that and accept that I'm not there at the moment, and I can try and live here in the now, but it's very, very scary not knowing. Will I get back that full recovery? Will I be the person that I used to be? What will it be like in the future? What will life. Look for me, but gradually, I think learning to accept my health condition, it's a process, and I don't think when people talk about learning to accept the change, it's very much like a grieving process that you go through. And I don't know if you relate to this, but I felt a sense of loss about who I used to be that person, and it took a long time for me to sort of feel very much like myself. And it's not a case of, you just wake up one day and you say, Okay, I accept this. I mean, it would be so simple, so amazing, if you could just wake up and be like, yeah, yeah, that's fine. This is what I'm dealing with. This is all good, and it's fine. But I found that it's been a long process, and acceptance doesn't just come in a light bulb moment. You'll find yourself in certain situations, maybe when you have a setback in your health, and you're just thinking, No, I don't want to accept this. I don't want to be living with this. But somewhere along the lines, you have to take that pressure off yourself and maybe stop trying to fight to get your life back, and more, just kind of learn to be happy within the here and now and knowing what it is that the things that you make you happy. And also, I do think, while my exercise abilities are very different what they used to be like, I do think that, from a mental health perspective, going to the gym really, really does help me. I'm not able to go as much as I want, and I'm not able to do the things that I want to, but I can appreciate the things that I can do now. And for sure, whenever I come out of the gym, it's like, oh, it's all these happy hormones. It makes me feel good knowing that I can achieve something in the gym and making improvements. When I set goals in the gym, it feels like that's my sense of purpose. I can do something with that. I can achieve these goals. But it's almost like, separate to the brain injury recovery, which feels a lot slower, and while my body doesn't move the way that I want it to move, it's a case of just appreciating, well, this is what I can do, and this is amazing that I can do this. Yeah,

Jackie Baxter  
it's like, find something that makes you happy, or something that brings you joy, isn't it? I remember you saying, I think after I'd been ill for a while, and I remember you talking about your happy list, and that I thought, actually, that's a really good idea. And I've told other people about it since, yeah,

Speaker 1  
so that was literally sparked by a phone call very earlier on in my binge recovery, one of my friends phoned and he asked me, what you doing every day that makes you happy? And it was like a light bulb moment. I just thought, I don't know what makes me happy anymore, because there's so much about my old life that I'm just I don't have the ability to do anymore, and I don't know what it is that makes me happy. So I wrote a list, and I put it on my fridge, and I've actually got it here, I can tell you some of the things that are on it. And for me, it's just about it doesn't have to be big, grand moments. It's finding happiness in the little things that you can do every day. So initially, when I had the brain injury recovery and I thought, Oh, I don't know what makes me happy anymore. I really don't know when I had all these emotions that I just felt, I very much was grieving for the old me, and I didn't feel like myself, so it was almost an opportunity to draw a line in the sand. Okay, what can I do that makes me happy now? So when I talk about all the simple things, it really is. So one of the things that the top of my list is having Sunday copies with my family. This is something that we've done for years and years. I've got a massive family, and it's very, very difficult for me now to be around a lot of people. It gives my brain challenges. It's difficult, but it's one thing that I keep doing when I feel able to because it is being around my family and having that support is so important. Another thing for my list, rather than it being a weekly thing, something I can do every day, is drinking hot chocolate in my favorite mug. And it is. It's such a tiny little thing, but to me, I have this mug that I absolutely love. It's got a unicorn on it, and it's just I can sit on a chair that I like, get all nice and cozy with my nice cozy blanket, I can look out the window and see the nice greenery, and it is just, it's the simplest things. It is literally write yourself a list of things that make you happy. Another one is a smell of a lavender candle. I actually, when I wrote this list, I actually wrote the wrong word. So I had the smell of the lavender calendar, which obviously I've changed now to candle, but I knew what I was meaning simple things doesn't have to be like massive achievements. It's just finding some little things that make you happy. And even if you're on a really, really bad day, and you might not be able to remember the things that make you happy, but if you have a list, and then you can find other things as you go along that make you happy as well. So I maybe had 10 things on the list, and then I keep it on the fridge, and then it just when something else comes along that, oh, that's something else. And, yeah, absolutely,

Jackie Baxter  
it's just something that makes you smile. Is so so important, isn't it? You've mentioned JP, who's obviously amazing, and. My other half is also brilliant. And, you know, friends and family, and they can be really, really understanding, and they can be amazing, but they can't get it in quite the same way, can they? And you've found other people who've got similar conditions to you, and how's that help? We'll be right back. Hey there. I'm just jumping in for a second to see if you're enjoying this episode. If you're finding it useful, maybe you would consider sharing it somewhere, a friend, a group, or even on your Twitter feed. If everyone was able to share just once, we'd be able to get this information out to even more people who really, really need it. So please consider sharing somewhere. If possible you can. I hope you enjoy the episode, and thank you so much.

Speaker 1  
Yeah, so initially, when I had my brain injury, I think there was a real struggle, not only for me to understand it, but to try and have support around me that understood as well. My mum was very ill years and years ago, and she nearly died, but touch wood, she's with us now. Thank you. But she was of the attitude that she texts me one day and she's like, darling. I think today you should just try and do one thing tomorrow, try and do two things the next day, try and do three things. And I could see where she was coming from, because if you're in a position where you're fighting something like a different health condition, then that for a lot of people, can work, but it was almost like when you have a brain injury, that sort of approach doesn't work, because when you're dealing with neuro fatigue, you can't just push on and just say, Yeah, I'm going to do this. So it was a bit of a struggle to understand myself, but then educate other people in a way that they would know how to help me. But one thing that I found really useful was making friends with people that 100% understand what it is that you're going through. So early on, when I got diagnosed with post concursion syndrome, I remember it being a whole world of scary bananas, like I couldn't I couldn't understand what I was going through myself. I felt very, very different about life. Felt like an alien had been planted in my brain, and there was a lot that I just didn't understand, and it was a very, very challenging and scary time. But one thing that for sure helped was I joined a Facebook group for people in the UK that have post concussion syndrome as well. And from there, I got chatting to people that it was just like, wow. These are my tribe. These are the people that understand me. I feel like I'm at home with these people. I don't feel like I'm the one that stands out. I don't feel like I'm the weird one, you know. And so I became friends with a couple of girls, Jody and Claire, we all had our accidents within two weeks of each other back in march 2018 and to have that support, they can't explain just how good it feels to have people around you that absolutely 100% get what you're going through and know how to support you. So from chatting on Facebook, I think it was Jody suggested that because we'd all been texting each other individually, I think she asked us if we wanted to be in a little Whatsapp group together or but from there, a friendship developed, and there's not very many days go by that we're not in touch. So being able to speak to people that just get you it means the world, because people without this health condition, whether it's long COVID Or a brain injury or any other health condition, I think people can try to understand but I don't think that they fully understand it, unless you're actually living it yourself. But I do see that there's a lot of crossover in terms of symptoms and life challenges and experiences with people with different health conditions, but for sure, get yourself around people that really, really understand you absolutely

Jackie Baxter  
because other people, they can have the best intentions, but it's not the same. We were talking about friends and family and things and you know, my partner's been amazingly supportive, but his life has obviously been changed quite a lot too, because, you know, he has to help me a lot, and we can't do all the things that we used to do together, so I feel bad that it limits what he can do as well. And that's feeling of guilt. Do you get that as well? And how do you sort of get over that or deal with it? Yeah,

Speaker 1  
that's a tricky one, and so hard, isn't it? Yeah, I really need somebody, a partner, that is very patient and very kind, and luckily, we've both looked out on that one. But yeah, I totally appreciate I felt exactly the same. The feeling of it was bad enough that my life changed because of what happened to me in an instant. But the longer things went on with JP, I could say that he was doing so much to help me. It was very, very difficult accepting that I need help. But in a way, I felt really, really guilty because his life had to change so much to accommodate my health and what I was saying earlier about not knowing your self worth. I think it's hard to. Accept that you need help. It's hard to let others in and actually do the help for you. And I say this day, I don't know why JP is still with me. So many times I've tried to push him away. I've said to him, Look, don't feel like you have to stay in this relationship out of any sense of loyalty. I don't want that. If you don't want to be in this that's okay, and I'm prepared for you to walk away, because it's like I lost sense of my own self worth, and I just thought, No, you didn't sign up for this. Yes, we've been together for years, but this wasn't part of the plan. But then over time, I think once you open yourself up to that help, and there's a lot of things where it kind of It like makes your dignity go out the window. Like, sometimes it can be like, literally, he needs to walk me through a bed. He needs to take my clothes off because I can't do it myself. Doesn't happen so much now, but in the past, sometimes you would have to cut up my food for me and feed me because it was something that I couldn't do myself. But I think we've had a few very open conversations, and over time, I've learned that, you know, I'm still valuable as a human being, just like everybody is. We're all equally in that respect. Nobody's better than anybody else. And then I think once you realize that, yes, something life changing has happened to you, but that's not all of your life. That's not all of you, that's one part of it, and somebody still loves you, and you love them back, and it's okay to let somebody in and just, you know, realize that this person is here for you. He wants to be here to support you. He's doing it because He loves you. It's not because he feels that he has to. And I think that, I think just comes with time.

Jackie Baxter  
I think you're right about the self worth thing, though. You know, that's definitely a big thing. You know, the things that you valued about yourself, suddenly it's completely changed, and it's hard to kind of come to terms with it all, isn't it, for yourself, let alone somebody else?

Speaker 1  
Yeah, that's exactly it. You know, your life changes in an instant. But you know when, every time the doctor would sign me off, if it was for a month, I would think, right, okay, so we've only got another month of this, and then it'll be fine. And we would have this conversation where I would say, Well, what if it gets to a year down the line and I'm still not fine? Will you still be here? What will our relationship look like? Because when My accident happened, it was like there was a shift in the relationship. So it didn't feel like we were partners anymore. It very much felt like he was my carer, and to have that sort of change in dynamic in the relationship, it's very, very hard, I think, to accept that, but to kind of get over it as well, and then get to a point where, yes, you do need cared for, but just to get that proper sense of your relationship, to sort of come back, rather than it feeling like your partner's caring For you, it's, it's been able to, I suppose, find things that you can do together, that they're new, they're new adventures like previously. Well, I got to know you from Hill walk, and you and Malki, and then it was something that JP and I love to do together, but we also did a lot of photography together as well. And then when I wasn't able to get up the hills, of course, I still wanted him to go out and enjoy things. I'm never going to deny him that, but I got to a point where I would think, well, what can we do for us? You know, we can't do that anymore, but what can we do together? So, JP, last year and bought a kayak, which was initially it was, the way that he pitched it to me was, it was so he could get closer to the hills that were far away they hadn't climbed yet, but it would just help him to be a bit closer. But then also for me, he saw as it could be an adventure for us, something for us to maybe go away and have wild camps and explore the islands, likes on Loch Murray. So we did that earlier this year. And it is, it's just, it's a case of, I think sometimes you just have to accept, okay, so we can't do these things together, but as a couple, what can we do together that is new, that is fresh, that we can do together? So I don't know if, if you and Matthew have done anything like that as well, or if you sort of felt the dynamic change in your relationship as well. Yeah,

Jackie Baxter  
definitely. Yeah. We discovered that all of our hobbies, they're all active things. Everything we to do together is outdoor stuff. So we've had to work on other things and try to find something else, because otherwise you just sort of sit on the couch in the evening thinking, so now what? Yeah, it's a readjustment, isn't it? Oh for sure, yeah, yeah. I think you know, you've talked about the fluctuating good and bad days and the relapses and the weeks where you're not feeling so good, which I think people with long COVID can definitely relate to as well. Have you got any other tips for getting through the bad days when you sort of feel like you've hit rock bottom again?

Speaker 1  
Oh yeah, yeah. And that's it. It's hard when it's so unpredictable. What you could do yesterday you might not be able to do today, but I just think, just do whatever it is that feels good for you, like everybody's different, everyone's recovery is different, but do what it is that makes you feel good for you, and just trying to accept that what you're going through, if you're having a bad few days, then don't fire it. Don't try and push through it, because that's where I find. It difficult when I'm having a relapse or a setback, I think, Okay, after three days in bed, I'm done, and I want to do more, but I just can't. And it's almost having that battle with yourself where you begin to feel a bit better, but then you maybe overdo it, but you don't always know that you're overdoing it at the time, because it might not hit you with worse symptoms till later on. So one tip there, I would definitely say, is, especially when you're coming back from a relapse or a setback, is just to rest before you actually need to, before you feel the need to rest. Just rest. And I have heard one of your other guests on the podcast did talk about that as well, but it really is definitely one thing that hits home for me, one thing that I do battle with, but I think it can be so easy just to carry on and think, Oh, I'm doing okay with this. So I'll just do a little bit more of this, or I'll do a bit more of that, even if it's cleaning the bathroom, like I try and break it down into little stages. So I'm not doing it all in one day. But then sometimes I'll just think, Oh, I feel okay. I can do this. So I'll maybe rest for a bit in between parts of it. Then later on, it hits you, and you're like, oh gosh, I really shouldn't have done that, but it's when you feel happy in that moment and you feel like you can do a bit more. You just want to push but definitely rest before you feel the need to. And when I'm talking about rest, different people have different ideas of what rest is for them and what helps them, but what I've realized is, when I need a rest day, it's really not good for me to sit down and binge something on Netflix as much as you just think, oh, you know, you're only lying in bed watching a little bit TV. It's okay, but fair time I've realized that I think it was JP that picked up on this, that anytime I sit down, whether it's at the Mac or I'm in front of the TV. Anything to do with screens, it uses up so much brain power that you don't realize you think that you're just kind of you think that what you're doing is quite passive. No, you're just lying in bed watching a bit of TV, but it actually even looking at your phone for something on 15 minutes of your school and Instagram. Anything to do with screens really can take a lot out of you, and you might not realize that at the time, because it might feel that you're doing something quite passive rather than an active activity. So I would say that for your bad days, find something else other than screen time that you can do. For me, I love to have baths and candle lights, so I'll put the fan off in the bathroom so I don't have that noise and it's just the light to write. I've got little candles, and for me, that's quite common. It's a case of, what can I do to help my nervous system calm down a bit? So I love a good bath. I've been gifted some coloring books as well, which is amazing, but Adult Coloring is not something that I'd really heard of or not paid much attention to, but it's amazing that I think, wow, like you would do that as a kid, you know, sit and do a lot of coloring and creative things, but I never, ever thought that would be something that I would enjoy as an adult. So that's something that's really quite nice for me. And, yeah, I think just anything that you can do that you know, is nice and calming for you, that will help calm down your nervous system, rather than doing things that are tech related. Yeah,

Jackie Baxter  
we're all so guilty of it, isn't it, you sit down, and the first thing you do is pick up your phone and check Facebook or whatever. It's almost like it's unconscious. Yeah, you

Speaker 1  
do it without really thinking about it, and you're like, Oh no, I really should be listening to my body, but you just automatically it's there. So yeah, sometimes I literally turn off my phone and, like, put it in the drawer. And because I don't have a great memory, sometimes I'll think, well, if I lose it for a while, then that's okay. It might

Jackie Baxter  
even be a good thing. Yeah, yeah, the screen time is sort of the cognitive tiredness is something that I never thought about before. You know, you go for a run and you feel tired, that's normal, but you read a book and you feel tired is not something that I thought about for sure.

Speaker 1  
Yeah, anything that makes your brain work for me, it's like anything I'm thinking, if somebody asks me a question and I have to really think about it, then you're just like, oh, you know, it becomes a lot more difficult. But yeah, cognitively, anything that works your brain in that way can be quite draining, and it can take a lot of you. So yeah, it's just a case of knowing what it is that works for you, that you can still get a sense of fulfillment from, but you're not actively trying to do anything physical. Have

Jackie Baxter  
you managed to find anything that will help you to manage any of your symptoms, whether it's conventional medicine or anything that's more holistic? Yeah,

Speaker 1  
so initially, but yes, I have a lot of symptoms, but there was a couple that I just thought I really, really needed help with at that point, one of them being pain, and one of them being sleep issues. So if we take pain first of all, and I will say that anything that you feel you want to do, speak to your doctor about it first, get medical advice. But one thing for me to help with the pain. I got to the point where I was alternating between ibuprofen and paracetamol, taking as much as you're allowed to take every day, to help me deal with the pain. I had so many headaches. I had what I call brain pain, and I still get this now. I still get the really intense headaches and the pain in my body. So the best way I could understand it is, is feeling like you've got too fake, but it's not in your teeth. It's in your bones, like your legs and your arms. And I got to a point where I just thought, I just, I never, ever wanted to have to take pain colors. But for me, it's just something that is helping me. And I suppose it's a myth that before this happened to me, I thought that anybody that was in pain had any kind of pain condition that, oh, you can just take pain colors and you'll be fine. And it's not the case at all, because it's something that does help me manage my symptoms, but it's not like it fixes all. It doesn't make it go away. It takes the edge off it admitting that, yeah, I need to stronger than what I can do over the counter, because it's not working for me anymore. And I remember, like saying to JP, and so this sounds very dramatic to say it, but it's something that I do think at times is I would, literally, I would just chop off my legs so I just don't feel that pain anymore. And you know, that's a really, really sort of hard thing to say and admit, but when you're dealing with something that gives you a lot of pain, you would do anything just to just to get rid of it. But it took a long, long time for me to get that help. I think initially, my doctor, at the time, was just thinking, oh, you know, it's fine, just deal with it. We don't want to put you on anything long term at that point. But then medication was definitely something that I needed, and I do still need now. So other things I would say, is just, when it comes to pain, just do what it is that feels right for you. I have a 10s machine that I use. They can be helpful for all different kinds of pain and but for me, it almost gives you a kind of put it to a level where it almost feels like you're feeling a little bit of pain. But in doing that, it takes away the big pain. So for that temporary time, while you're using the 10s unit, it gets rid of that pain. And pain can be so exhausting as well, so you want to do anything that you can, because, yeah, it affects you so much. But the 10s machine, for me, while I'm using it, it's great, but unfortunately, when you stop using it, the pain just comes back. But at least you can get that bit of relief at the time. I also have an acupressure mat as well, which is kind of, like, I don't know, like maybe a gentler version of walking on nails. So it's a mat that you lie on. So you can have it from like the base of your spine up to maybe about your shoulders. And then there's a bit for you to put your head on it as well, at the top, separate bit for your head. And the first time I used that, I was just thinking, oh my gosh, this is so painful. Like, I don't know how people can do this, but as you relax into it after a period of time, it almost feels like something comes over you. It's just you feel this heat, you feel this warmth, and it makes the pain go away. And it's just, it's one of those things that I just thought was crazy before I tried it. But yeah, so that is definitely something that that helps me. And then on the other side of things, where it comes to sleep, like I said, I've got a lot of different symptoms I have to deal with, but the at least these two, if I can get more of a handle on them, then it helps you sort of manage other things in the day. So when it comes to sleep, I've realized that anything that I can do to calm my nervous system, to get it into the rest and digest state, is very helpful, because my brain spends too much time in the fight flight or freeze response, and we do need it to be more in the what they call the rest and digest phase. So I find that restorative yoga really helps for me. I was going to a class before lockdown, and it really, really lovely, but I always felt at the end, when you did yoga nidra, you would lie there with your blanket on, it would feel nice, and you would zone out, and you're not meant to sleep, but I always did. But then at the end of the class, people get up, and then they're like, talking as normal. So it takes away that nice, relaxed feeling that you had. So in a way, I think lockdown has helped for that, because there are yoga classes that you can do online and restorative yoga if there's a period of yoga, Nidra, at the end, I know if I go through that class and then I lie with my weighted blanket on me, and I put an eye mask on to make it very, very dark, then I will fall asleep in yoga nidra, and it puts you into a much deeper state of relaxation. And then on that subject of being in that deep state of relaxation, I found that a flotation tank really, really helped me. If there was one in my area, if somebody was to buy one and start a business in Dundee or Angus I would be signed up. I would be your top customer. I would be there every week, without fail, because when you go in there, there's so much salt that you naturally just float. You don't have to think about it, and it's just such a nice experience. You can put the light out if you want to, but what you're kind of doing in the flotation tank is you are restricting sensory input so you don't have a sense of if your body's in water or not. It just because it's in skin temperature, it just kind of all feels the same. And I come out of it feeling so so relaxed. And it helps me when I was going to the flotation tank weekly that would give me the best kind of sleep without having to have anything medical, like pharmaceutical that for me. It was just so relaxing, but ultimately, it was just too far away for me to go into regularly. And I was lucky that I did have a friend that would drive me there and back. But then it got to the point where I just thought it's too much of an ask to be doing this regularly, but if there was somebody in the area that opened up with location task, then yeah, I would absolutely sign up for that. And then one last thing we've got noted down here is meditation. Now it's not something that I was ever really aware of or into before my accident, but now it is something that I find super helpful for me, I use an app called Insight Timer, and there's a lady's voice on there that I absolutely love. She's called Bethany Oriel Hagan, and she's just has such a calming voice. So when you go on there, you can select what it is that you feel that you need help with, whether you're in pain or you might need help sleeping, or you might feel anxious, whatever it is that you feel, you can do a little search for that. And there's lots of different teachers that pop up, and you can just have a listen and just do whatever it is that feels good for you in that moment. And I will admit that most of the time when I listen to Insight time where it will just help me fall asleep, even though that's not the intention, even though I'm meant to be staying awake for the session, I know that I would say nine times out of 10 if I listen to that, then it does help me sleep. And you'll know yourself, it's amazing how much sleep that you actually do need. Yeah,

Jackie Baxter  
more than you could ever imagine. Yeah, totally, yeah. Amazing. You've done a lot of raising awareness since your accident. I mean, until it happened to you. I had never heard of a brain injury before. I didn't realize it was a thing at all. How did you get into this, and has it helped you to have a bit of a purpose as well?

Speaker 1  
Yeah, so in the beginning, like I said earlier, I didn't really know that what I was dealing with was going to be a long term thing. I just remember that in that instant. It's hard to put into words, but yeah, life just wasn't as I knew it. Once had that accident and then got diagnosed with post concussion syndrome. I'd never, ever heard of this. I had a concussion before, but literally, all that I knew about concussion was that you would possibly get headaches, maybe feel sick, maybe get dizzy, maybe for, I don't know, a couple of days, but I didn't know that a concussion is a brain injury like so the way that I talked about my health, it took a while to actually call it out for what it was. I would almost make a joke of it, because it was hard to accept. So for the first wee while, I would call it things like, Oh, I took a tumble. And then it developed to Oh yeah, I had a bump in the head. Then it was like, Yeah, I've got head injury. And then I don't know what point, but it developed into, yes, I have a brain injury, and it's post concussion syndrome. It took a while, because I was I was kind of almost frightened to admit that that's what it was, and that it could be something that was going to affect my life for a long time, but at that point, I just remember being so scared I couldn't understand what was going on with my body, what was going on inside my head. I felt very angry. I was I just felt like a very different person, and in some ways, I felt like I had lost my sparkle. I felt that there was so much doom and gloom around me, and I was struggling to understand the body I was in and it just nothing. Nothing made sense. And yeah, I felt that for a long, long time. I lost that sparkle. I lost that part of me that made me feel alive, that part of me that made me feel like I resist for life, like before my accident, I for sure I was on the go along. I could handle a lot of things, but then in an instant you get your brain injury, and life as you know, it just changes. So what started for me was I started doing Facebook and Instagram posts so that my friends and family could see what it was that I was going through. And I guess I kind of I wanted to try and explain what I was going through so that others would understand. So I wrote a list. I'm good at list, but I wrote a list and I put it on my old Instagram page, and I just said, Look, these are the things that I'm feeling right now. These are the things that I don't understand. And one of them in particular was to do with my memory. I had to say to people, look, if I don't message you back, it's not personal. I just forget. And even now, like over three and a half years down the line, I still get that. I still get the like, people will text and I have intention of doing things, but it could be weeks or months down the line I see something. I'm like, oh, did I get back to that person? I'm not. I don't think that I did, or I think that I did, but then I look and I didn't. And you've got all these communications across texts and emails and all different social media that becomes very, very hard to communicate with people. But essentially what started for me was just putting up these posts. It was a need to be understood, because my life at that time, and I'll pinch a phrase from my friend Pippa, but she described it as. Scary bananas. My world was full of scary bananas. I didn't understand at all what I was going through, but I had this feeling, I had this need to be understood. And then when I joined the UK Facebook group for people with PCs, then I began to have that understanding. And I guess when I started my website, findmy sparkle.co.uk, and it was remembering how scared I felt at that time and just wanting people to not feel like they're on their own. I wanted people to be able to connect with others that understood with me. I just wanted to have an open door to say to people, look if you're early on in your recovery, or wherever you are, if you're not understanding this, then I'm here for you, and you're not the only person going through this. And then I can point them to the groups that help me absolutely

Jackie Baxter  
because that feeling of aloneness is really scary, whatever it is, I guess I'll put links to all of that into the show notes, because I'm sure people would love to see that. Oh, thank you so much. You're absolutely amazing. And it's really, really useful to hear there are things that you've told me that have really, really helped, so I'm hoping that they will help other people

Speaker 1  
as well. Oh, thank you. You're so kind, and I really appreciate you having me on. I'll pop

Jackie Baxter  
a lot of links some of those things you've mentioned. So if people want to check them out, just head down to the links. Thank you so much. Oh,

Unknown Speaker  
yeah, thank you. No, it's been great. Thank

Jackie Baxter  
you so much to all of my guests and to you for listening. I hope you've enjoyed it, or at least found it useful. The long COVID podcast is entirely self produced and self funded. I'm doing all of this myself. If you're able to, please go to buy me a coffee.com. Forward slash long COVID pod to help me cover the costs of hosting the podcast. Please look out for the next episode of long COVID podcast. It's available on all the usual podcast hosting things, and you get in touch. I'd love to hear from you.

Transcribed by https://otter.ai