Take A Break From Therapy
Show Notes:
Battling post concussion syndrome has been quite the journey, a winding road filled with challenges and triumphs. As someone who's been there, I, Bella Paige, want to share my experiences navigating the labyrinth of recovery - from managing therapies to assessing progress. Remember, sometimes the greatest therapy is just being 'you' for a while, stepping away from your patient persona, and appreciating your everyday self.
Living with post concussion syndrome is not just about managing symptoms, it's about understanding them and acknowledging the multilayered nature of this condition. Together, we'll delve into the complexities of PCS, discussing everything from light sensitivity to headaches, the struggles of maintaining a daily life, and the importance of setting realistic goals on your path to recovery. But remember, it's not a race, acceptance is key and assessing your progress is crucial.
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Please note episode transcriptions may not be 100% accurate!
Bella Paige
Host
00:03
Hi everyone. I'm your host, Bella Paige, and after suffering from post concussion syndrome for years, it was time to do something about it. So welcome to the Post Concussion Podcast, where we dig deep into life when it doesn't go back to normal. Be sure to share the podcast and join our support network, Concussion Connect. Let's make this invisible injury become visible. The post concussion podcast is strictly an information podcast about concussions and post concussion syndrome. It does not provide nor substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. The opinions expressed in this podcast are simply intended to spark discussion about concussions and post concussion syndrome.
01:07
Hi everyone, this is episode 121 of the Post Concussion Podcast and we're on video now that you may have seen that. If you haven't, please go check it out and hit subscribe. Make it an account today on YouTube through your email, whatever you use, and subscribe, even just to my show. Totally, make my day. I totally appreciate it, as we need to get to a thousand and we're not even close because I just launched this a few weeks ago, so please check that out. If you want to just watch small clips, my favorite parts of the episodes they're on YouTube, as long as the full episodes as well, but those are just audio versions, just like you'd find on Apple podcasts and things. And don't forget to also subscribe on there, because I would appreciate it, because subscribing makes my day and, yeah, just takes two seconds out of your day and makes my day light up, so that seems worth it, right? So make sure you subscribe, take a minute, go to YouTube, hit that button. If you're watching this on YouTube, hit that button right now, because that's basically like sponsoring the podcast. It's the same thing. I understand that so many people have financial difficulties after concussions, which is why we opened up Concussion Connect to being free for members, which has made a world of a difference, so make sure you check that out. It's a bunch of survivors in a safe place, safe community, and we have things that come out every week that are great for you to interact with. You can post things, ask questions, kind of do whatever you want, and that's like one of the best parts of it. So make sure you take a look at that.
02:39
But what I really want to talk about today is, I think, the thing that I'm going to get a backlash for, but not from survivors. I think survivors will get it. I think healthcare professionals might not love me after this episode, but that's totally fine, okay. But what I'm actually going to talk about taking a break and I don't mean taking a break in a way from sports that I've talked about before, where you really do need to take a break as an athlete to get better but this is more like taking a break from being a patient. So if you know what I'm talking about, you might understand. We talked about this in support group just a few weeks ago, where we have one the part group member who actually takes December off annually from therapy, being a patient and all that, and I'm telling you why you should do that and kind of the importance of taking breaks.
03:32
A lot of the time we get into this therapy mode and if you've ever not done therapy for a while or not known about certain therapies and say you go to occupational therapy or physical therapy or vestibular therapy for the first time and you come home and your symptoms are out of control, that's kind of because you're pushing yourself, you're pushing your brain, you're pushing things that you've never done before and, of course, as therapy progresses, all these things are supposed to get better. But how are you supposed to just like know if it's actually better if you're going every week? Because if you're going every week you can see progression. But what if you were just living everyday life? And sometimes it's just exhausting If you've done it before? You know, trying to manage all your therapies is intense. You know it's very intense trying to keep up with all those daily activities where it's like Monday, tuesday, wednesday, thursday, friday, saturday, sunday pick a day off that you want, and you are going to do these exercises every single day and they're tiring, and that's okay that it's so tiring. But it's really where you can benefit from taking a break.
04:37
And I'm talking about this from a physical standpoint and a mental standpoint. And this is the part where medical professionals might not agree, because they want you to get better. And proactive therapy is important, especially in the beginning. But if you're someone like me, like a lot of the survivors in KINGDOM Connector, you've been doing this for a few years or you've been suffering for a really long time, maybe take a break and maybe you'll notice, you know, maybe things will get worse and then you know, you know what I need to be in these therapies because I'm, you know, tanked by taking a break but maybe, just maybe, you'll notice a huge improvement and like not saying it's going to be like extraordinarily huge. But just the relief of not having to worry about going to therapy every day or twice a week or once a week for an hour and not doing at home exercises, and just being a person before being a patient, can be really beneficial. And I'm not saying that therapy isn't important. I'm just saying sometimes it's okay to take a break and just be you.
05:42
I've talked about this on the podcast a little bit about how I would just kind of give up, I guess, but it wasn't really giving up, it was more like just being me for a little bit without my illness. And you know that's not always as easy as it sounds because I would get overwhelmed if you're going to the neurologist and going to this therapy and that therapy and I just I couldn't keep up with all the things at home. But I was still a kid, like I still was going to university or going to high school and I still wanted to go with my friends when I could, and I still want to get schoolwork done and all these things. So when you add therapy on top of it, it's a lot on top of being ill and having daily symptoms. So sometimes if you cut that out I'm not saying cut out medications and all that cause sometimes that can be a very dramatic effect.
06:27
I used to do that. But you still only last about three months. Usually the first month was great, cause I just kind of felt like I got to be a person. And then by the third month I was back in therapy and back on medications because I was like, okay, can't do this anymore. So I'm just saying pick a short period of time, but maybe you'll really like it. Maybe you'll pick and only go back to a few therapies. Maybe you'll switch it up and maybe you realize that you actually need something else.
06:49
But I'm telling you that it's okay to take a break. I actually had somebody message me on concussion connect the other day and they thanked me for giving them permission. You don't need permission to take a break from therapy. If you're exhausted and you're burnt out and you need a break, walk away for a minute. That's okay. I know there's all these studies that say all these things are very important for your brain, but your mental health is important too and your wellbeing in general. And so if you're dreading going to therapy every week and you aren't even keeping up with your exercises at home so you're not progressing, then it's okay. I'm telling you it's okay and I'm telling you you know, bring it up with your medical professionals, tell them, ask them. I'm just gonna go take a break for a few weeks and then I'll be back. Do you think that's okay? And see what they have to say? Maybe there's a serious reason that they really don't think you should, but I believe most of them will be okay with it because they'll understand that you know what. It's okay to take a break right now because it's gonna help you in the end right by getting that reset in your brain that's already injured. It gives your brain a little bit of time to heal. It kind of gives you time to rest and kind of reset.
08:01
Take a view on what really is affecting you day to day, because maybe it's just your therapy sessions that are flaring you up like crazy and not everything in daily life so much anymore. So consider it. It's not that easy but, if you may know, sometimes taking a break is okay, I think. Sometimes we think it's giving up, like that member that messaged me saying, like I gave them permission I was like I didn't give you permission to do anything. I just say it's okay to just live with your illness, live with it. Sometimes it's not going away and I don't want to be the person that says PCS, post concussion syndrome, persistent concussion symptoms. You know me, call it what you want.
08:39
I'm not saying that it's affecting you for the rest of your life, but some people it is. Some people end up in the bandwagon like I do. Some of you already know this. You're four years out, five years out, six years out. I've talked to people who are 20. They're way into their 50s. They got injured when they were younger. They've had brain injuries, they have symptoms and of course, they're less severe, but they still exist and okay. So now we have all these symptoms. Great, let's do what we can to get rid of them. That's what therapies and doctors and medical professionals are for. But what about the rest of your life? Because therapy sessions and doctor's appointments are only so much of your day. So what about the rest of your life? You still want to. Maybe go get a job, maybe you want to go to school, maybe you want to play sports if you can safely. Maybe you just want to run around with your kid.
09:27
That's where the living with illness is just as important as the treating it, because you have to live with it, because maybe it's not going away in a month, maybe it's not going away in six, maybe you're the unlucky person that's stuck with things for life. And I don't want to be negative because I'm one of those people. I have four chronic illnesses. That's four. And yes, my nails, if you're on YouTube right now, have ghosts on them and pumpkins. But yeah, four illnesses to men. And I think if I just focused on treating them, even though these ones aren't treatable anymore, I'd be burnt out. We're living with them.
10:04
I do really well and naturally, by living with PCS I found I improved a lot faster because I wasn't so focused and so angry and so bent up about comparing myself week to week. I just kind of took time to live life and I think just by exposing myself exposure therapy is a huge thing in the concussion world right now it actually helped me a lot just by going out, just by doing things, just by taking things and baby steps, by measuring things myself, seeing how I was doing, realizing when to take breaks, realizing what was making worse. So sometimes that's okay and I don't want to go in circles here, but I just really want to talk about, like learning to live with your illness is something that takes a different mindset, then you probably will be in. If you've just started this I'm saying like just started as in like the first two years, living with illness probably isn't on your list to do because, like you know what, keep going, push as hard as you want to try to get better. But if you're at those two years or more, I'm not saying give up on therapy, I'm not all these things. I've done tons of therapies later on that have helped me significantly, especially eye therapy. But also learn to live with it.
11:18
Don't be so focused on the recovery and be focused on being able to live with what you've got right now, Because then if things do get better, it just gets easier. Like if you can live with all of your symptoms, as bad as they are right now, depending on where you're at. I know many people that are struggling severely every day and that's a little different. But if you're dealing with minor symptoms and I'm not saying they're minor, but minor compared to some extreme situations learn to live with them. How can you get through your day okay without exploding your brain or being wiped out for a week or five days after just doing one thing? How can you be successful in your own life in your own way, whether that's volunteering or just going for a walk every day or managing to read a book?
12:03
What's important is, what are you looking for in your life? And, of course, we have to change these things and readdress them. As someone who's ill, what's on my goal horizon was not the same as what my goal horizon was before I was ill, but it's really important to understand that these things can change your life. So just think about it Now. Take the time to reflect. Where am I at in my recovery? Am I just spiraling in loops? Has it been years? Have I ever considered just taking a break? Have I ever actually actively thought about how to live with this versus how to just fight it? Because fighting it, I can tell you from experience it's exhausting. We can fight it all we want, but we usually lose most days than not, and that's just. That's a fact. So I just, you know.
12:52
Wanna throw in one thing Don't forget to subscribe to the podcast, like right now, cause I will love you forever, especially if you subscribe on YouTube. Did you want to create awareness about concussions? You can check out our entire clothing line through the link in the episode description or go to our website postconcussioninkcom and click awareness merge From t-shirts, sweaters, tank tops and multiple designs, including the podcast. Nothing mild about concussion and more. Make sure to pause this episode right now and order yours before you forget, just like I would Welcome back to the post concussion podcast with myself, Bella Paige.
13:31
And so the other thing I want to talk about is how hard it is to keep up with the daily living, and you might know what I mean, depending on what you're dealing with. And that's like maybe not eating gluten is really good for you, maybe you've noticed that it helps all your symptoms and sometimes you're gonna screw up, but that doesn't mean you don't know what you're doing. For example, I have pots and I'm sure lots of you kind of know a little bit more about dysautonomia. If you don't, we do have an entire podcast on it and it's just getting. The research is growing. I will make sure to have another episode on it in the next few months, cause I think the research has already changed tons from just last year. But, for example, I have to think these really gross salty drinks every day I actually have one right here they're disgusting and that is because there's so much salt in it.
14:17
I had a few relaxing days for the first time in a weekend a few weekends ago. So I just didn't really bother. I was like I'm not really doing anything. What's it gonna hurt? Oh, it hurt me, that's. What it hurt Was just a few days of not drinking that salt. I was like tanked, like I could barely get out of bed. The nausea, the spins in the morning, the whoosh of like, like when you stand up, and like all the blood drains from your head, and it's just like that feeling was all back and I'm like, oh, I need to chuck some salt, take some salt pills, figure it back out, let my body rebalance, rest for the day. But I didn't get mad at myself because you know what? I was relaxing for those few days and maybe my health was on the back burner, which I paid for. But I didn't get mad at myself for paying for it. I just accepted it, which is sometimes very hard, depending on your situation, of course, with work, family and obligations but just don't beat yourself up. I think I used to just get so mad at myself of why I wasn't better, or what was I doing wrong? Or was I not trying hard enough in therapies? I wasn't. Believe me. I'm telling you, I was a horrible patient. Because I was a horrible patient, I hated all of it.
15:23
So the other really thing I want to talk about today, other than, you know, learning to live with this, subscribing to the podcast on YouTube, because you're my favorite people, and things like that I also just want to throw in have you checked out our clothing yet? Because Our clothing line is actually great. You just want to create small amounts of awareness for concussions and brain injuries. It's a really good place to start. You can just buy a t-shirt or a sweater. There's tank tops too, and I absolutely love mine, and so the other thing I want to talk about was actually something impromptu.
15:59
Post-concussion life is tough. I think it's something that we don't talk about a lot, because we talk on the podcast about things like having a hard time, but we don't always talk about how bad that time could be. And I don't like to get low on the podcast too much, because it's supposed to be uplifting, it's supposed to give you ideas, it's supposed to give you hope, and I want it to do all those things. I want it to be a good place for you to go, but I also want it to be somewhere that you can relate to, and that's kind of what this next part's about and that's what PCS is actually like. I haven't had PCS for a while but I have chronic illness and it's not easy. I wouldn't say there's anything easy about it.
16:52
There is benefits, for sure that I've gotten out of being ill like all of this Understanding people a thousand times more than I ever would have in the past. Like I can call out when someone is depressed or struggling or having issues way before anyone else, because I know all the telltale signs. I had functional depression a lot of the time, so you didn't really know. I would walk in and have a conversation with people and when I turned around there'd be tears streaming down my face because I had such a hard time actually holding it together just for that conversation, whether I was in so much pain or just mentally struggling so much light sensitivity wasn't like, oh, the lights were too bright, or were you staring to the sun and it's like, ah, no, it's like the lights in front of me right now are too bright and I'm in a dark studio.
17:43
Everything was too bright. The sun outside was too bright, my screen on my phone was too bright. People still make fun of me because if you actually look at my phone, it's yellow, because I find the blue light is always annoying on my phone, so it's tinted in night mode 24, seven around the clock. You can do that. I actually have a video on our help series on concussion connect on how to do that. If you ever need to, you know, change your phone around. That's just light sensitivity.
18:10
But then what if you added noise sensitivity? So if you think about concussion symptoms, like layers it's, you have to remember that they're not individual. You're not dealing with one and not the other. So you're dealing with light sensitivity, everything's really bright. Your eyes may be hurt, you know it's really hard to kind of go out and function because you're just overwhelmed with the light. But then you add noise. Okay, so people talking can be too loud. Music playing can be too loud some days. A horn, a bird, wind doesn't always matter, sometimes it's just noise in general, because your ears are really sensitive, so you add that to your light sensitivity. So now you have two things, two senses, being completely overloaded.
18:52
And if you're like me, I was actually really sensitive to scent when my headaches were really bad. So I still remember the day driving to a special medical clinic. Actually, my sister put lip chap on and she was in the front seat. I was like what is that smell? Like I like overreacted, but I didn't at the same time, and she's and my mom's like she's really sensitive to smells and my sister's like lip chap, she's like I'm not even near you and I was like I know, because like instantly when I smelled it, like I had all this pain in my nose. So I got pain in my eyes, I got pain in my ears, I got pain in my nose and then I got a headache, because most people have headaches. If you're wondering why I dot my eyes, it's because I got something called an autoimmune condition, called showgreens. You won't see this on the recorded podcast, but you will see it on the YouTube. But so all those things headaches.
19:42
Now you can't think because you have all these overloaded sensations. You can't focus because your vision is not picking up things correctly. So you're adding all these layers, and all these layers are overwhelming and then all the therapies to address them are really difficult as well, because you know you do one but it flers up the other, so then you feel like it's not worth it, but you have to keep doing it to get better. So it's just really important to understand the multi facets of concussions and they do say there's six different pillars of concussions and all these things. But I find everybody's experience is so different. I don't think anybody fits into one category. I think we're multi-dimensional, and so are brain injuries, and you know, I get that it's really tough.
20:29
I get that you might be struggling mentally a lot right now, and maybe you just found the podcast, maybe you've been listening to it for a while, and I'm sorry if you're struggling that much, but I can tell you that things get better. They get so much better because it's kind of a lot better for me. Things are doing. You know, other than what? I forget to drink salts, go for baths that are way too hot. You know there's a list of things that I definitely can't do, that I used to be able to, but I wouldn't say I'm struggling in life, like I can't live a good life, but it's definitely not the life that you might expect and that's okay too.
21:06
It's just really important to kind of take a different approach, maybe with your life, and that might not be so easy, and so don't be afraid to try new things. Don't be afraid that you're ill, because it's not the end of the world's, but I guarantee it has felt like that at moments and I don't deny that, because I've felt like that too. And if you're dealing with like we talked about the therapies and you're going and you're doing so many, that's great, but you've been doing it for a really long time You're allowed to take a break and go back. There's nothing wrong with taking a break. Don't be ashamed of taking a break. You're not giving up on yourself. You're just giving yourself maybe some time to just Be who you are a person with illness and you, there's a lot more to you than just that.
21:52
Took me a long time to realize that there's so many things to us and it doesn't have to be one big thing. I said show jumping and I thought that that was my life and that's who I was. But I'm so many things. I'm so many more things than I ever imagined. Illness kind of makes us feel like the only thing we are is ill, because it's the only thing we're doing right now. But you're so much more than that and don't forget it, and I want to thank you for listening to today's episode. It's kind of a little bit, you know, a little different, but I just want to talk about a few things.
22:24
Of course, you can actually send requests for specific episodes. If you're wondering why certain specialists have come on the show, it's because people have requested for a topic that they specialize in. So don't be afraid to reach out. Don't be afraid to reach out in concussion connect. I'm usually a thousand times faster about answering on there and I hope to see you on it.
22:42
And do not forget to subscribe. I'm saying that in my very serious voice. That actually exists, don't forget. I would appreciate it and I'll love you a bit more for it, because, honestly, the concussion community is incredible. There's one community that's more supportive than anything I've ever been a part of in my entire life. It's this. So don't forget to hit that button on whatever service you're on. Subscribe today. Have a good day, need more than just this podcast. Be sure to check out our website, post concussion Inccom, to see how we can help you in your post concussion life, from a support network to one-on-one coaching. I believe life can get better because I've lived through it. Make sure you take it one day at a time.
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