Robbie (Post Concussion Syndrome): Chapter 3 - Searching for answers & things that helped along the way

Episode 4: Chapter 3 - Robbie Frawley - Searching for answers & things that helped along the way (PCS).

In this episode I tell my story of recovering from post concussion syndrome (PCS). It took me 7 years to fully recover, but if I knew at the start everything that I know now I believe it would have taken me only a fraction of this time. That’s why I want to share these learnings with you. I hope that they give you some hope and they help you with your own recovery.
In this chapter I talk about my search for answers and things that helped me throughout this period.

My brilliant guest interviewer on this episode is Associate Professor Tasha Stanton. Tasha is the Osteoarthritis Research Theme Lead for IIMPACT in Health at the University of South Australia and a National Health and Medical Research Council of Australia Fellow. 

Tasha is a clinical pain neuroscientist with original training as a physiotherapist. Her research focusses on pain and she has a specific interest in pain education, osteoarthritis, low back pain, cortical body representation, somatosensation and body illusions using virtual and mediated reality. In short though, she’s one of the leading pain researchers globally, and it was ultimately through meeting Tasha and learning some lessons from her field of pain science that helped me to find the final steps back to 100%.

Full transcripts and show notes are available for each chapter on the podcast website: storiesofrecovery.buzzsprout.com

Shownotes:

• ^01:05 - My trauma rehab physician to helped me with 'how much' to push, to help me calibrate my own understanding - as it's important to work just below threshold,
• 2:20 - I learned (with great surprise) that things can change (improve) quickly, even when you are at your worst (with symptoms). 
• ^03:30 - Crutches which I found helpful whilst in survival mode: 
  • ^03:30 - Getting immediately up and out the door for a quick 10min walk in nature when I awoke to the alarm. 'Don't think, DO...',
  • ^06:15 - I was initially allowed to walk for 10min/day (ideally in a quiet, natural environment). Noticing what I could see, hear smell and touch while walking helped to quieten my mind and my symptoms. As with everything, I graded it up over time, 
  • ^09:31 - When things became overwhelming I found it was often because I was forecasting too far out. I learned that by bringing the focus (of what I needed to do) right in close, it helped (only thinking of the next immediate task in front of me, putting everything else out of my mind),
  • ^12:25 - The trauma rehab physician often shared great words with me when I was struggling, one day she simply said: "Be aware of where you are...and keep going",
• 14:57 - Other things I tried along the way (be wise, assess the risk/reward to you):
  • ^15:40 - Take an active role in your rehab and your recovery,
  • 16:00 - Physiotherapy, osteopathy, reflexology, kinesiology, reiki, eating good brain supportive food (fatty fish like salmon and lots of fresh fruit and veg), supplements (fish oil, curcumin (from turmeric), glutathione), vestibular exercises, 'floating', an app called 'superbetter', meditation (it's worth persisting with - I like the calm app),
  • ^19:05 - Quotes helped me a lot throughout the period. A couple of favourites:
    • "No one and nothing is ever broken and can't be fixed",
    • "The only thing to fear, is fear itself" - Franklin Roosevelt, 
• ^20:43 - Family and interests were really important and supportive,
• ^24:29 - Think about DIM-SIM Therapy - Tasha and I explain this in lots of detail,

^Robbie's main tips

Transcript

Note: Time stamps for the chapter episodes are based on the full episode recording.

Robbie Frawley
Welcome to Chapter 3. In this chapter I discuss my search for answers and useful things I found and used along the way

Tasha Stanton  
Where did you find yourself I suppose after that, and where how does that compare to where you are now?

Robbie Frawley  43:14  
Yeah, sure. So I suppose that, you know, if we look at that, stand back kind of view. So that probably went for you actually asked a question earlier. But you know, how often would I see the team, I think I only saw them three times, maybe physically. So I went in there for the initial testing, I might have gone back, maybe a month or two later. And just seeing maybe the physio, just for something particularly, and then maybe I went back once more another six months later, but I would often speak to the trauma rehab physician, if I was having, I was concerned about something or I was uncertain about what I should be doing in a certain situation, or if something was pushing too far, or not pushing enough or speak to them that were really generous, and, you know, I could email them or I could ring them and get some calibration of okay, what is what is the right amount? And just because you mentioned before about threshold and working near threshold, it was really difficult to work out where threshold was or is. And so that certainly took a while. And I think that's part of the boom bust initially is you're not if you're not aware of your body in you're not that aware. That's why you'd bombast because you'd think you'd find still, but you'd push way past it, and then you wouldn't know until you crash. And so part of that was talking to her and getting a bit of a calibrating your own understanding of what is appropriate and what's too much and what's challenging. Because you're always you are always working near threshold. And so you are always feeling pretty ordinary, but you need to keep pushing but not push too.

Tasha Stanton  44:56  
Did you find it that threshold, like change day by day cuz I would imagine it might not say actually static even for a similar activity, like, if you were super tired or didn't get a good sleep,

Robbie Frawley  45:07  
Oh, absolutely. In terms of making changes, I would probably make changes every it'd be based on feel the shortest time period probably be two weeks before change. But, you know, there probably would go months where they you wouldn't make changes. And other times, you'd be making them quite quickly, because you felt you're starting to feel like you had surplus energy, perhaps. But yes, stuff would vary, you know, as you scale in, yeah, day to day, throughout the day, like, it was quite amazing how even you could be feeling so bad in the morning. And you get, you know, once you get into the day, you could actually get through like, I probably had a whole lot of crutches through that period. And some of those were from the team and some you just picked up yourself. And so I will come back to your question. I've just realised this isn't really, I like it, I just realised this some extra information. So in that initial period, they'll probably smell the crutches. For one, one of those for me, often I would wake up, and I'd be almost paralysed by fear. And that was fear of how I was going to be that day, and whether I could cope with with it and whether I could get through the day. And that sounds. I mean, it even sounds trivial to me. But it certainly wasn't at the time. And I guess the stories that we tell ourselves, and if we allow ourselves that's effectively that fear is is a voice on in my head saying, when I wake up, right as you wake up, oh, you're not feeling good. Like, this isn't a good start to the day. Like, you're feeling very fatigued, and you're feeling you know, you got a bit of a headache already. And you've just had eight hours sleep. And you got a pretty big day today. I don't know if he can, you're gonna be alright, can you get through today? And you know, that would then just like, once that happens, it starts to like, build and run on itself. And if you're lying in bed, and you're like, Yeah, my era. Yeah, it's amazing how we can have these conversations. But But like, really, that's just one character in your head. And then you're almost like receiving it. Ah, yeah, it's true, I am fatigued. And then you're thinking, wow, I was gonna get up and go for a walk. But maybe I really need another hour of sleep. And like, maybe it's critical that I get another hour sleep just because I might not actually get through the day and my body, my brain might need another hour of sleep because he's so overly hyped about your condition and your brain. And that's just a trap. And so that's something I'd really say to people is probably one of the most useful crutches that I don't even know how with I don't think anyone told me I think it kind of came from a quote, that wasn't completely relevant. But Tom Murphy, who was a really famous Richmond coach had this and he was really vigorous, energetic, positive, you know, supporter of people on a real, someone I kind of idolise and he had this quote, that was, when the sun comes up, you'd better be running. And because he would get up at like, you know, five, dock and run 5k, and then go for a swim and then do 500 Push ups or 500, sit ups and push ups. And so that was just him. And even though I couldn't run, obviously, at that point, the grace McKellar had had the head said, I want you to walk for 10 minutes. If you can walk in nature, that's the best, you know, calm, quiet setting where there's trees, maybe away from traffic, but walking is really good. And just notice, like, notice what you can see. Notice the trees and the leaves and the clouds and what you can hear, just pay attention to that and just start off with 10 minutes, again, 10 minutes. Normally, I would serve for three hours, like what he talking about, anyway, 10 minutes, okay. And we can grow that up over time, you know, in a couple of weeks from 15 minutes, and then we might do 10 minutes twice a day. But as we've talked about, it grows, and it's quite helpful to have guidance and know what is appropriate and

Robbie Frawley  49:41  
something to work, you know this then you're not questioning whether you're doing too much or not enough. So that walking that getting up in the morning and walking. That was my one sort of activity I was allowed to do early on. And so it became really important to me and I was really fortunate I lived in I was living in horrible I lived, you know, and it's beautiful outdoor setting. So within about a block of my house, there was a really nice patch of sort of native vegetation. And I could walk to that, and I could just kind of close my eyes, like just pretty much just walk there, and then be walking, taking it all in. And I do that 10 minute return trip. And that was sort of the first thing I would do. And so I something to do with Tom pay fees, quote, early on, when I I must have fought with myself a few times, and maybe stayed in bed, and it wasn't helpful. And so somewhere along the way, this voice, these other voice, helpful voice, in my head kind of yelled at me, like, Get up, get up, get out the door, and just walk. Like you can think later. You don't think now, you can think later. And so that was really helpful, because it just removed didn't matter how I woke up. I just wouldn't allow myself to start that process of querying how you felt, and whether you know, you would get through the day, I just turned off thinking and it was just get up, put on your shoes, walk out the door, almost like a zombie, and just walk. And then you were just fine. Like it's your walk, you're out, you know, halfway through the walk is birds flying over you and the sun starting to come up and it's beautiful. And, and you're noticing looking at the, you know, paying attention, as I've said, like looking at the leaves and looking at the clouds. And by the time you'd get back to the house 98% of the time, you'd feel good enough to then go Yeah, like, Okay, now I'm gonna have a shower. Now I'm gonna have breakfast. And it was just, it got you over that hump. And it's amazing how sometimes, then by the end of the day, you can be feeling some of the best you've ever felt. And so things can change really quickly. And I mean, I would have been the first to tell you, I'm feeling so bad at this point, I, it's not going to be better later. But it's amazing how quickly it can shift. And so that that was really helpful. The other thing is, if things are really, really difficult, not only early on, but later on, if you'd have things happen, where you get a knock or whatever. And things become really difficult, I find that it's often when you're forecasting out, and you're thinking, Oh, how am I going to cope with X scenario? When I've got something on this weekend? What am I going to do to deal with that, you know, I've got this commitment, how am I gonna deal with that I can't, I might be not able to cope. And so almost have this thing of like bringing your hand like right into your face and going okay, like, let's just do with this. What's the next thing you have to do? Okay, the next thing you have to do is get up and go for a walk and in that setting might be okay. Next thing I have to do, if I can get to work today is when that's all you have to do. Don't worry about anything beyond that. And then it's like you get to work. Ah, last one, okay. Just get to morning tea. And there's something that's incredibly enabling about that. And I think in our own lives, we can, we can almost fall into that trap of forecasting so far out that things can become burdensome. And so it's just a really helpful tool. It's just bring it right back to the shortest possible, just deal with that. That's all you have to deal with.

Tasha Stanton  53:26  
And I think that's a lot of what you're saying, would really hit home actually, for a lot of different people, whether or not they've experienced any type of, you know, head injury or anything, like lots of times people will wake up, you know, feeling anxious in the morning, and that can paralyse people. And it's sort of like those thoughts. They're thinking you need to do things, but you're not physically moving or actually doing anything. So all it kind of does is generate a copy of itself, that perpetuates. And that is can be so stressful. Like, I know, I love that idea of, you know, just bring it here, just get it to that, like, the number of times I remember, you know, not wanting to you know, get up and do stuff in the morning, like a run or something. So just like it's cold, it's crappy. Don't feel like I'm gonna get tired. But like, I remember I did different athletics in university and, and high school. And they always said, when one coach has said, You know what, just get just get up, do five minutes of it. If if you hate it, and you still feel like garbage, quit. Yeah, but most of the time, once you do five minutes, or maybe it'd be two minutes, depending on your situation. You're fine. And you're actually you're pleased that you've done this. And I find I apply that actually even to my daily life stuff. When I have a task. That's kind of hard. I'm like, Okay, I'll just do it for five minutes. That's good. But by the time you've been five minutes, you're stuck into it enough that you shut up all the other voices that you can't do it.

Robbie Frawley  54:50  
So you started you're good. You've got over that first hurdle. That's

Tasha Stanton  54:53  
so I hear Yeah, I think this is very good advice. Now,

Robbie Frawley  54:56  
I've gone way off tangent. But actually There was one other thing before we go back on tangent was there was a piece of advice that the trauma physician told me at one point when I was struggling, and she said, be aware of where you are, and keep going. And that he didn't nerve with me like a positive nerve in that, when you were trying to struggling to find that threshold. And you often you felt like things were a little bit too much. So it was a fine balance between you know, we talked before about you overdoing it, probably the longer it went on. It was more almost just, it became more of a trudging grind, because you were never feeling good. And you weren't feeling as though you were getting better. And so he was just like, you were smart on his slow march for that was awful. And felt really isolated and felt really dark. And, and so if you were trying to make I remember this, for trying to make this changes in Okay, I need to I've been sitting on six minutes for too long, like I need to get it down to five minutes. But I don't know if I can do it. Like it's I'm already running on fumes here. And she would say be aware of where you are. Keep going. I just found that really calming, arming. It's acknowledging that yes, what where you are is tough, and it's not easy. And so acknowledging that and being aware of it. Yep. And keep going. And really quite eloquently like that a lot. Okay, you're back?

Tasha Stanton  56:40  
Yeah, I'm trying to remember, I think it was something along the lines of so you've been you've described, I guess this this slow, gradual improvement over time. What sort of what experiences did you have after that? And sort of between that bit, and then your continued recovery? Yeah, sure.

Robbie Frawley  57:00  
So that went for some years, I suppose that taught me these, these key skills of staying started to become a bit more aware of your body and your energy levels and what your body and your brain needs to kind of adapt. And they've given me that confidence that I would return to full health at some point, and strategies to sustain me until I got there if you like. So I would only then just check in occasionally with them. I guess I was just that used, that was a path that I just took forward really until the last year. But along the way, you would still always or I found I was still always searching probably for a silver bullet. And that takes you on all sorts of interesting and Divergent Paths. And some of those are probably more helpful than others. I'm not sure if any of them, you know, in and of themselves are a silver bullet. But probably all of them are contributed in some way, hopefully, positively. Think you've obviously got to look after yourself and be aware and try not to do anything that's risky or could detrimentally impact you. But it's hard to be really clear. I think it's a bit of a cumulative impact of all the different things you try to do to help yourself and probably just even the fact that you are actively trying to help yourself. I think I've probably learned more recently about through you and that you know, your team and the work you do, how important it is to actively participate in your recovery. But yeah, I tried a wide assortment of things along the journey to varying levels of success. Including physiotherapy, osteopathy, reflexology, that's where they mess at your feet, very relaxing kinesiology rikey. I tried to eat food and have supplements which I'd read were beneficial for the brain. So fatty fish like salmon, and fish or supplements for the omega three fatty acids, lots of fresh vegetables and dark leafy greens. You know, I try to have turmeric and or curcumin, which is a natural anti inflammatory. I tried glutathione. I did a lot of different vestibular exercises, you know along the journey, which is where you move your head from side to side or up and down was trying to maintain focus on a point on the wall. They were prescribed by the rehab centre. I tried floating once which is basically like a warm spa which is designed in such a way as to remove all sensory stimulation into your body. I was constantly searching for and trying things which appeared to be low risk, but which might have some potential gain.

Tasha Stanton  59:50  
I have very little problem when things don't have danger. Yes, when they don't have risks involved to them, or involved with them and they're not you know Being charged exorbitant prices or things like that, then I think a lot of times, they're explorative options for people because we're all unique.

Robbie Frawley  1:00:06  
Absolutely. There were some other things I remember coming across an app called Super betta, which was developed by a game developer in who had, I think, suffered a concussion. And so she'd actually created it. after or during her recovery, she'd found video games really helpful. And so it was, it's using all of the techniques that she uses in her game development of positive reinforcement, and I guess setting challenges and, and that sort of thing, to try and reinforce things that are going to be beneficial for you and are going to be helpful for you. So it was kind of cool. I used it for a little bit. Meditation, you know, I've toyed with for many years, because people always sort of talk about how great it is. It's something that I've persisted with, and it is difficult, but I find really helpful. And I think, you know, there are many free apps out there. I think persisting until you find one, the voice aligns with you like, some of them are just annoying, you know, for me, whereas others are really, really resonate. I'm like, Oh, yes, I can, I can listen to you.

Tasha Stanton  1:01:16  
I like that idea of exploring, because I do think often we get suggestions of things, and maybe we try one. And we're like, oh, no, that's I hate it. But But that idea that yeah, there there might be some out there that resonate, more or less with you. And it's kind of finding that one that speaks to you.

Robbie Frawley  1:01:31  
Absolutely. Yeah. So for me that that's actually that's something I find really, really helpful in normal life. Now. You know, if I've got something or I just need to sort of quiet down or be a bit more focused meditating is really helpful. I found quotes really, really helpful.

Tasha Stanton  1:01:49  
How did you how did you use quotes, like you mentioned a little bit the one quote from the footy coach that kind of helps you to develop this strategy or crutches, you called it to get out of bed? Yeah. Did you? Did you sort of use them when you were in those really rough times? Yeah, yeah,

Robbie Frawley  1:02:04  
I wish I'd written them all down on the way. Because I would hear something or see something written or someone would say something, and it would just hit a chord with me. And I would like, fix onto it. And that would become my Yeah. My motivating kind of credo try voice, yeah, to get me through tough periods, basically, until it wore out. And it's funny how they would, they would wear that anyway. So I'd like use it until it no longer had its magical effect. And then I'd drop off, and I'd find something else. This was a good one, that someone that I am very impressed and inspired by said, he said, no one and nothing is ever broken, and can't be fixed. And again, I think it's just that idea of kind of hope. And that's really powerful. Franklin Roosevelt, he had one that I've always loved. And that is the only thing to fear is fear itself. Because I find that often, in this situation, it was kind of a fear around am i doing too much is this gonna hurt me is this you know, probably all quite just personal at the time, if something resonates with you, and it's helpful, use it, you know, until it's no longer helpful and move on. What else? Family and friends Oh, particularly family, I sort of probably wound vaccine friends for a couple of years, because they local friends, I would say but I wouldn't, I just didn't have the time or the energy surplus to kind of go out of my way to see people. So if people even then you had to be careful, because it could really drain you. But family were really important. And I actually kind of was lucky I lived about an hour from them. So I could go and see them on the weekend. And it actually meant that I had much more time with them quiet time and recuperative time with them. That was really special, but I wouldn't have had. And interests are really important. Like at that time, I felt incredibly grateful to them for just their support and their understanding. And they're listening to me if I needed to just vent and that kind of ability to if you are really struggling pick up the phone and talk to them. And I don't know, like I suppose you were just having to put on a front for like 99% of your life, like pretending that everything was alright, go to work, just pretend. And then it was just so training. And so it was super nice to have people that were just, you know, they're in your corner and you know, you're not having to pretend to sort of be impressive or something to them. And you could be weak, you know in front of them. And although that turns her off, and then you'd wish you weren't doing that and loading them up. I think for them. It's you know, Dad always had a great quote, problem shared is a problem halved. And so they their support was really important. And so there was this one thing I wanted to kind of do to show my appreciation that was cooking for. And so I got really into Jamie Oliver. And I could, you know, hear this great thing about him was it was almost like audiobooks, he had them, yet he shows, so I could never watch his race recipes, because it was I almost said, like recipe book, dyslexia recipe, I've always just yeah, you have to read it like 700 times. Whereas you gotta watch one of these shows. You watch it once, and you just know it. And so I'd have to watch it a couple of times, but then I'd like, over the week, you know, I'd break it up, you know, in the way that taught me, I might watch an episode on Monday after work. And then on the Tuesday, I might write the list. On the Wednesday after work, I might decide, you know, do half the shopping, and then, you know, anyway, so then by the time we got to the weekend, I went home, and I would like cook them this meal. And I don't know, in a time period, when I wasn't, I didn't feel like I was really doing anything, I was literally just like going to work to try to sustain that. So that I didn't drop off employment. And I didn't really feel like I was doing anything outside that it was quite important, I think to have an interest that you could actually succeed in and you were doing something for others. And that was really nice.

Robbie Frawley  1:06:21  
Again, I'll, this is circling back. But I think I mentioned our parents that sort of really recommended I try to persist with work. And at the time, I felt that was really problematic. And I wasn't sure if it was the right call. Because I felt like I needed to just focus on my recovery and get better. I think, you know, as is normally the case with parents that was put on. And if I'd stopped, it would have been that much harder to restart. And probably the fear around that and coping would have been too great. Whereas I always kind of just had my toe wedged in the door. And now were so supportive. And then it meant that I could grade back up. And it's been consistent then. And a really important, you know, I suppose reinforcement of you through life. So those are all pretty, like, sort of,

Tasha Stanton  1:07:08  
that's amazing. Because I feel like as you're talking, I'm, I'm making this picture in my head of you and all the things that are surrounding you. And I'm seeing you as a person and I'm seeing nature and I'm seeing walks in nature, I'm seeing you know, family that you really trust and care about that you can be truly vulnerable with which is incredibly brave and hard. I see, you know, valued life activities that are cooking, that are all these different things I see work that is hard, but that is still contributing, and it's keeping you you know, it'd be nervous and fearful to not also be in it. And then you know, I that's just such an amazing cloud around you have probably what we would call sims or safety in these, these things that are, they're pushing you towards saying, I don't need to be protected quite so much. And that is such a cool thing to see, like I want to make this picture. Because that is incredible. And I think that, that the ability of all those different things to add up is also really cool. Because it's like you said even before, it's probably just wasn't one thing. But you add into that picture, you actively seeking out different things. And also putting in these strategies in place to keep yourself grounded in yourself motivated with quotes with different things like all of these things are just a huge, big like, hug. It's beautiful.

Robbie Frawley  1:08:42  
Are you able to explain? Like I i understand that when you see that? Because I've heard that and I think it summer explains an approach to getting better, that would be really, really relevant for people.

Tasha Stanton  1:08:57  
Yeah, sure. So we we talk about this idea of we all have our own unique protect ometer this unique system or body systems, brain systems that that helps us protect ourselves. And how that's determined is we kind of take a balance of the safety and the danger that's within our lives. And so various different things, they can be a safety or they can be a danger. So a person that you hang out with, I enjoy spending time with you. So I would you'd be a safety, a safety and meet. If I was with someone dodgy and I'm in a room I that parse person might be a danger. So a person could be both things. But the idea is that it's taking a look really quite deeply into your own life of the different contributing factors that may be adding to your need to protect your body. So they be dangerous or they might be adding to the fact that you don't need to protect your body safeties, and I guess the where I was looking at what You were describing is, is all these different ways that you're adding in Sims 'safety in me's' and trying to tip the balance so that you have more of those than 'danger in me's' such as anxiety, fear, you know, you know being being worried about what the future is going to hold all of those things that can they can push the balance towards needing to protect, but you're actively adding things into the safety column to push the balance the other way. And that's, I mean, that's beautiful in terms of what we would recommend, and we'd hope for people to be able to do,

Robbie Frawley
That's the end of Chapter 3. In chapter 4 I explain the major breakthrough that gave me the final few pieces of the jigsaw