Robbie (Post Concussion Syndrome): Chapter 5 - Final learnings back to full health

Episode 4: Chapter 5 - Robbie Frawley - Final learnings back to full health (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 that they help you with your own recovery.
In this final chapter I talk about the final things which got me back to 100%, answer some questions from Tasha about the recovery and give my advice to others still recovering.

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 full health.

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

Shownotes:

• ^01:00 - I began to question if I was being 'overprotective' of myself by not participating in the things I enjoyed which involved the risk of knocks and bumps. A picture formed in my mind of walls and a ceiling around me containing me and what I was capable of and I saw these barriers getting stronger and more intact every time I said 'no, I can't' to doing something. I started to realise that I needed to break through these walls before they got so strong that I couldn't,
• ^02:07 - I still followed the Pain Revolution and received an email notification about their upcoming 'tour' through eastern Victoria. I began to wonder if 'perhaps this is exactly what I need to do?'. It contained risk and the physical capabilities required were beyond what I could imagine at the time, but it would be saying 'yes' to something that scared me, and I'd be in an environment with the right people and the right msgs around me everyday which I felt I needed to hear and to absorb,
• ^03:58 - I ran the idea past a trusted friend who is a physio, is trained in current pain science and knows me and my story to validate if the idea had any merit. With their validation and support I signed up and the feeling of it being a 'right' decision was profound. Trust your gut instinct. Even when you cannot see yet 'why', it's a good guide,
• 06:47 - Describing training for and completing the pain revolution ride,
• 07:50 - I went to every community presentation I could during the ride and found that I learnt and reinforced things which I'd heard before in new and beneficial ways every time,
• ^09:24 - I realised that my family had become 'overprotective' of me (like Bertie) over the years and that the msg'ing I was sometimes receiving from them was (although well intentioned) also limiting my further recovery. This is a sensitive area to broach, but I think it is important for you to consider and assess for yourself,
• ^12:23 - Trust your gut, try to be curious and be kind to yourself and to those around you,
• ^13:48 - Consider what 'might' be possible rather than comparing yourself to before,
• 15:45 - My msg to those still living with and recovering from post concussion syndrome.

^Robbie's main learnings

Transcript

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

Robbie Frawley 
Welcome to chapter 5. Final steps back to full health.

Robbie Frawley  1:45:39  
There's another little part of that...the reason I was riding to work, and that is because of the Pain Revolution, because I was still subscribed to the emails. Yeah, I was still engaged with it, it still made sense to me, I still emailed you on occasion. Yeah, just sort of touching base and giving you updates on where things were at. And I just followed it, I found it interesting. And I knew that it was helpful in some way, as I've referred to, before, I just didn't know how to tap into it for my situation. And I suppose there's this discussion of protection over protection that we've spoken about. And so something in my mind started to just sort of trigger around. You know, there's all these things and I'm not doing and maybe I'm being overly protective of myself, like, really, every time I say no to something, no, I can't come surfing, I'd love to come surfing, but I can't because blah, blah, blah, you know, I can't go skiing with you. Because now I can't go cycling because blah, blah, blah. Every time I just realised every time I say no to something, effectively, I'd created these walls, I picture a glass wall around me, above me. And every time I said no, it was like a strengthening those walls and that ceiling that was just gonna contain me in it. I really what triggered that. Because I'd never thought that thought of that before. But so I just sort of suddenly thought I need to break through these walls and the ceiling that I've constructed around myself before. They're like brick walls that I can't get through. And so I'd obviously always been interested in the pain revolution and that ride from Melbourne to Adelaide. And you know, subsequent years, it's been travelling through different areas and different regions every time targeting a different area and stopping in different regional centres and spreading the good word of pain sides. And and so I'd sort of been interested in so I wonder, I wonder if one day I could do that. But it always seemed far off and fanciful. And I think my parents pretty much banned me from riding riding a bike because it was far too dangerous risk reward wasn't there, you're on the road exposed to people. So there's something I think there was maybe the call out for the next pain route, which we're going to be through so Victoria. And so that was just this again, this little thought that aim is exactly what I need to do. Like it is the risk reward. It just doesn't make any sense. Like if you looked at it logically, it'd be like, No, you don't. There's far there's ways you can challenge yourself or something that don't expose you to this risk. Because if you've had multiple concussions, you've taken seven years to get better. And then you go, what you're gonna go riding on the road for 900 club 900 k's and then you got to train for that. What do you think your chances of not getting? How many people get knocked off by a lot? Like, what are your chances of that happening? And not getting knocked off? Like it's doesn't make any sense. So again, I didn't tell my parents I am seen. Well, this comes from a position where I've been generally very, very, I've told them everything. Yeah, they've been incredibly support network. But I think that was also something about realising I needed to stand on my own feet. And I needed to make decisions sometimes that might not necessarily have their support. If I deeply within myself, yeah, knew that that was the right decision. And so I did run it past, a friend who is both a physio and understands pain science, and knows my family and knows me very, very well. So that I could truth test it and just make sure I wasn't getting carried away. And they were very supportive. And I just remember when they kind of I told them what I was thinking and the thought process and why. And they just said yes, absolutely. Like it was always like with the with the neuro psych like but they were much more enthusiastic. And ours remember hanging up from it was a very short conversation, I'd left the office to make this phone call before I either did or didn't sign up, because there's a cutoff date. And I just remember The excitement and exhilaration and just rightness of the decision that I felt was just so profound. Like I was just like, yeah. Like just fist pumping like in like, it does seem so weird, but it was just felt so right decision. And I've probably just learned over time to trust my gut instinct, my intuition a lot more even if sometimes doesn't make something doesn't make sense logically but you feel really within your core that it's the right decision. And so I did that.

Robbie Frawley  1:50:34  
And I committed to training and so that subsequent fall that I described was I was training for this ride and, and so I suppose it's important because I've made this commitment that hang on, I'm I am being overly protective of myself, I need to challenge these this over protective mechanisms like conscious yes, that I'm aware of before I imprison myself in it. And then there was a deeper level of subconscious or unconscious overprotection. And so probably that even just changes, you know, coming off the bike instead of then, if I hadn't made that decision, and I was just randomly writing, I would have been lambasted myself for being so silly in taking such a risk, whereas instead, that wasn't in question anymore. I just committed to doing this and it was the right call.

Tasha Stanton  1:51:18  
Yeah, that's, I think that has a lot of merit to the idea of, you know, those things that really deep down, feel like the right decision for you. Because I think at the end of the day, we're the only ones that are in charge of unable to do a lot of things to shape our future. And if there's something that is really, you know, really pulling and really saying this is the right thing for me. I feel like when we don't listen to those things, I always worry, those are the things that we regret.

Robbie Frawley  1:51:47  
Yes. That's been my

Tasha Stanton  1:51:48  
experience. And regret is hard. So I applaud the bravery. I think this That was amazing. I was just very sad. I didn't get to come on that one. Oh, yeah. It was a great ride. Yeah. So what was what was the, I guess, the most favourite? Or what was the best part of that ride? Well, you were doing.

Robbie Frawley  1:52:06  
So the ride itself was amazing. I trained on a road bike, I guess over the next six months training up for that, which was very hard. Yeah, working it through just below threshold, again, different thresholds, really. But, and then did the ride. And I suppose by that point, I just had confidence in myself, I guess, having made that decision to be, as you say, courageously sort of tackle it. And then also, the learning having come off the bike and the reinforcement of birdie in the story of birdie, I still used that. Sure, I'd have situations where I need to use it, but I had confidence in so I was sort of the ride just further reinforced my ability, because probably previously I wouldn't have that's quite an insurance activity, like I would go out and training and do 175 k's and be on the bike for seven hours. Again, just even from I probably wouldn't have coped with that previously, just from an fatigue perspective, was I didn't have any queries around that. And my body just responded, Well, it's an so the ride was great, loved it. But the biggest thing for me was I would just tried to go to every session I could get to so every day would ride somewhere. And then that year, there was, I think, the year that you did all of your writing, and then you were presenting. And obviously, over the years, you there was the realisation that that was maybe a bit much. And

Tasha Stanton  1:53:29  
they had an educational team. Come on. Yeah. And

Robbie Frawley  1:53:31  
so it got split out. And so there was an education team doing the, the bulk of the presenting. And so the riders weren't coming in really fatigued. And so we couldn't always go to the sessions, because sometimes just because we were going there earlier in the day, but these were sessions where again, there was a public session, and then a health professional session in each town we visited. So every time we got in in time for those I would go. And I just found it really reinforcing of all those messages, because every day you were hearing the same messages, but they are from different people were presenting them. And even though 80% of the slides are the same, they would do it in their own way. And they would do it with their own spin and emphasising things telling their own stories. And so every day I would get something new from it. Or it would make sense a new light bulb would go off or would reinforce something that needed to be reinforced. And the magic was just there every day and you'd hear you can see the impact it was having on people within the community so that for me was that was the absolute magic of it. Yeah, cool. When we've been talking about this over protective over protection, and Bertie. I actually do recognise now that and I've got to be careful in how I word this but my family did become a second version of Bertie with the same positive intent and 100% wanting the best for you. But there, I did also get messaging from them not to do things. And to just, you know, because they were concerned, maybe they'd seen me in her understate over many years over and over and over again, as I say, because probably when I did, they saw me all sort of all out. But as a result, it just, I needed to be aware of that. And that was part of making my own decisions and not telling them everything in the end, because I had to be against it and back from it and go hang on, is this messaging, I'm getting helpful for me and my recovery? If it is good, but I need to be able to stand separate from it and assess that, and acknowledge and think it, but make my own decision about whether I act on it.

Tasha Stanton  1:55:55  
This is it's so interesting that you say that because I it to me mirrors some of the principles that we look into things like self regulated learning, where what it is it's assessing that evidence or that information that's coming in and saying, How useful is this for for me right now? How well does this match with the other things that I that I know, or that I have have accrued? What's the source of this information? How much do I do I trust it in this case,

Robbie Frawley  1:56:25  
which is where it's really true with family is 99.9% of time? Trust them? 100%?

Tasha Stanton  1:56:30  
Yeah, yeah, exactly. So I think but I think that the fact that there is that process going on, is amazing. Because that's exactly. I think where we would want the goal to be in terms of taking in any new information. Because I think that's probably one of the biggest challenges. Just speaking very generally, is all the information that comes out on things like Facebook and or even just anywhere on the internet asked Dr. Google that can be can take you down hard paths, particularly in certain chronic conditions. So I think that point is really, really important of yet sussing out and thinking. Is this important, too relevant to me? That's really good. Amazing.

Robbie Frawley  1:57:15  
And I'll just tack on to that bit to my family. Yeah, your support and kindness and generosity through the whole journey has been absolutely sensational and life affirming. So thank you very much.

Tasha Stanton  1:57:34  
Big Sims. Yeah. Is there anything else that we've missed that you wanted to add?

Robbie Frawley  1:57:41  
Trust your gut, and, as you talked about, and really just be curious, and be kind to yourself, and to those around you and try to be patient. And that's really difficult. And get good people around you and and keep keep on going?

Tasha Stanton  1:57:59  
Yeah, it's interesting. From the, our side of the pain, pain science side of things, one of the things that we do often identify is that not every, you know, therapist or health professional that you work with is a fit for you. And that's okay. And if something doesn't seem to be, you know, working well, it's also okay to switch and get another one that you can identify with a little bit more, because I think there's lots of different ways to go about this. And just even the way that some people approach it might not work as well for you. And there's no, there's no bad feelings. There's nothing about that you you're on your journey. And you want to find the people that are your, your, you know, your strength, your people, your coaches.

Robbie Frawley  1:58:42  
Absolutely. So it's a be brave, just you got, and continue to challenge yourself and keep trying to get better. But having said that, oh, it's really tricky. Isn't the wheels, you can understand more about that around not trying to sort of not comparing yourself to the past, but rather, were you thinking about what you might be able to do in the future. And I think that's quite important, too. I think I was that was not a learning from well, I was I was constantly sort of comparing myself with Rose coloured glasses to what I was like before, and really, you know, the rose coloured glasses, portrayal I was putting on myself before meant that you were never taught and you never had a bad day, you never had a headache, and it's just unrealistic. And so it's helpful to realise that and stop comparing yourself and go, Well, I'm here. What might be possible? Could I walk for 10 minutes?

Tasha Stanton  1:59:39  
I like that reframing.

Robbie Frawley  1:59:41  
That's sort of pretty much all I've got, but what any other observations or additions that you think you've got or that you think are worth adding?

Tasha Stanton  1:59:54  
When did you have the moment where you realise that the book that you were carrying that you thought was gonna help was in English? Or do you remember when that was

Robbie Frawley  2:00:03  
not? I think it was necessarily. It was like a transition over time. I think it was more when I look back. Yeah. And then I remember, look thinking about that, when I met, you're probably doing the pain revolution myself, you know, at the end of that journey was sort of the fruition of that, but I probably already I don't know if that it wasn't a sort of lightbulb thing, but probably even doing that week, you know, I'd obviously had a significant learning leading into it during the training phase. And then, probably that reinforcement of all those lessons, and just reinforcing this is, I could have just read this book, and apply it to myself day one. Yeah. I probably got that over that week or over that, you know, six months from signing up. Yeah. Completing the ride. Yeah.

Tasha Stanton  2:00:53  
And so if you had to say, so if there's people listening that have post concussion syndrome, what would be you know, the one most important thing, or five most important things, I don't know how many, what, but what would be the key thing that you would really want them to take away?

Robbie Frawley  2:01:12  
He's tricky. First thing I'd say is, it's really tough. And I know it's really tough. And I know it's really scary. And you want to be better now or tomorrow. And that's frustrating, and intimidating. And you're still wondering even now, if your situation is the same, but I would say, the brain and the body, marvellous miraculous things, and that you can and you will recover.

Tasha Stanton  2:01:47  
And I think, especially if people haven't heard that before, from a health professional or from anyone that they've dealt with, that is a pretty life changing message.

Robbie Frawley  2:02:24  
Hey, guys, it's Robbie. Again. If you got this far. Wow. Well done. I'll have show notes on everything. We talked about this episode on the podcast website. There's a link to that in the podcast description, along with a full transcript. If you find that easier to follow along, or to find what you need. I do need to highlight that I'm not a medical professional. And that whilst Tasha is a physiotherapist, the advice and learnings which we share during our discussions are not medical advice, and should be considered and reviewed in consultation with a trusted medical professional prior to being acted upon. These are our learnings from our experiences. Take what is valuable, and leave the rest. Next episode, I'll be speaking with Lloyd Polkinghorne, a 36 year old newspaper owner and editor and a former mixed irrigator and father of two from Beryl in New South Wales. Lloyd was injured by a misfiring shotgun in 2013 was assisting neighbouring farmers to clean birds from their crops. The injuries who received were largely invisible, but the effects upon him was significant. He's one of the most resilient and courageous men I've come across, and I really look forward to sharing his journey of recovery with you. Until then, I wish you courage and energy on your own journey forward. Thanks for listening