10 TIPS for Post Concussion Survivors
Show Notes:
Sometimes we don't need conversations we just need advice to help us navigate our own recovery. In this episode listen to 10 post-concussion/brain injury tips selected specially by Bella!
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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.
00:29
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. Welcome to episode number 124 of the post concussion podcast with just me. Today we're going to talk about 10 tips that will help you in your post concussion life, and if they don't help you, they'll definitely help somebody else. If you know any other survivors in your life, make sure they listen to this episode, because there's some very helpful advice that we don't always think about when recovering.
01:27
So let's get into it. Okay, so tip number one is telling someone that you're struggling, or basically, how to tell someone that you're struggling. It's something we don't always think about, but it is something that we sometimes need to learn because, you know, we have a lot going on inside. People can't see it, so sometimes what's really helpful is having a way to do it. The first thing I always like to remember is think about who you're picking to tell, because if you just go out and tell anybody, it might not be your best choice. You want to tell someone that you can trust, someone that you value their opinion, or at least someone that you know might react the best way possible, and so the other thing we want to really consider is our expectations of this person. Are we expecting them to help out, or do we want them to help with finding their piss? Think about that. Or do we just want them to be a helping hand in a mental side of things? Do we just want them to be there for us when we need to have one to vent to? Do we just want them to give us a hug and be there for us, or do we want them to actually act on it? Just remember this when you're telling someone, because have expectations of what you need of that person, because if you don't tell them, they're not going to always know. So maybe you can ask for their help, maybe you can tell them. I really am telling you that I'm struggling, but all I really need you to be there is just be there for me. I don't need you to do anything other than that. So definitely consider that and then after that, remember to pick a good time. We don't want to say this as we're running out the door and we also definitely don't want to say this in a very crowded environment.
03:03
This is something that you should take time to tell someone. If this is something you've been working up to doing, don't forget to be appreciative of this person. Say thank you for listening, thank you for giving them your time, because you know this is a big thing to tell someone if it's something you've been struggling with for a while. But how do you even explain it? A good way to say is my concussion is still affecting me more than you could even imagine. Or you know how life feels like a series of open doors and choices. Well, mine feel all controlled by my concussion right now, and it's slamming every door at my face. Explain it however you want, but maybe think about it beforehand so you're not lost. You know finding words sometimes very top after a concussion. So this can be really helpful. And remember it's not a race. You don't need to just blurt it all out as fast as you can. If that's what's helpful for you, go ahead, but take your time and don't forget to expect different responses. Some people might expect with a lot of compassion, some people might be confused, some people might be hurt that you've been hiding it from them for a long time. So don't forget that. And if you really need someone to talk to, don't forget we have our support groups and concussion connect, which is free, and you can join at any time and take part and even just send me a message through concussion connect and I will always answer and be there for you.
04:22
Now let's get to our next tip. Tip two is to forgive yourself. A lot of the time we think of that what if? What if I did therapy sooner? What if I didn't quit on this therapy? What if I knew this? What if I told somebody that I was struggling? All these if, if, if, if scenarios and they're not helping us. So we have to stop the what if spiral. And something that really is helpful to think is you didn't know. I personally didn't know that my concussion was going to alter my life. I didn't know the symptoms wouldn't go away right away and I didn't know that staying in a dark room all day wasn't going to help me. We make decisions based on what we know at the time, so don't beat yourself up for something you didn't know. We can't get mad at our past selves because they had less information than we have now. You know we all go on roads that we don't intend to walk on, and you are human. We all make mistakes. Our lives make turns we don't expect and maybe we don't even want those turns to appear. But you did your best, and maybe your best looks different each day. But just remember to forgive yourself for the past. Maybe you don't need to do this, maybe you did everything right, but if you do feel like you're in that what if? Spiral of what should I have done? I did these things wrong. Just you know, forgive yourself. You did the best that you could with the knowledge you had at the time. So it's really important to remember this and now we're going to get to our third tip.
05:46
Tip number three is it's okay to change. This is usually for people that have been struggling for a while, but it is important to you know, be okay with it. Know that. Who am I? Who are you is a really important and really tough question to answer after a concussion, because you know, the longer we deal with these symptoms, we have a really hard time being like who am I now? I'm not. I can't do all the things I did before. I maybe have a different career now. I have a different passion, I have a different life. Maybe I'm more introverted than I was before, but who am I now? So you know, don't beat yourself up for this. It's okay to change.
06:24
Don't judge yourself for not being who you are before, because, if you think about it, if you go through anything traumatic or anyone around you went through something really traumatic, you wouldn't expect them to be the same afterwards. So don't expect yourself to be the same. Whether you go through this for three months, six months or a few years or longer. It's okay. You're not going to be the person you were in the past. You wouldn't have been that person anyways, because we change over time and I strongly believe that. So I am not the same person I was. I wouldn't have been the same person I was. Am I definitely affected more because of my illness? Absolutely. But don't forget that it is okay to change. It's okay if you don't recognize yourself anymore. Try to find peace with it, that you're a new person, that there's going to be overlaps. Think of a Venn diagram of before and after. They're not going to be completely separate. There's going to be stuff in the middle where you're still the same person, and so just accept that things change. So just think of that, don't beat yourself up. It's okay to change and we're going to get onto our fourth tip.
07:30
Tip number four is invisible doesn't mean it's not real. I know I had a really hard time with this. Just because others can't see what you're going through, does it make it not true? Does it mean it doesn't exist? I questioned it often, especially the more I got tests done, because the more and more tests I got done sometimes, the more and more okay I seemed. All these tests. Some of them would come up clear. I remember I did a cognitive test and it said I was in the average, and I remember being infuriated because I felt like I couldn't remember anything, anything at all. I couldn't remember that flash of four numbers on your phone that you have to enter to log into something. I had to do one at a time and sometimes go back three or four times to the same number because I couldn't remember them. So don't beat yourself for that.
08:20
This is kind of the theme of the tips. You have to believe in yourself, even if you're questioning it. Because I believe in you, I believe that what you're going through is real. There's a whole community of people in Concussion Connect that believe you. So if you need that, go ahead and log in and sign up today. But just don't beat yourself up. I think a lot of the time it's really tough because we start to question all our symptoms. We start to question if we're making them worse. But they exist and don't think it's not real just because other people can't see it around you and even if they don't understand it either. And we're going to get on to tip number five. Tip number five is don't compare to others, and I'm telling you not to do this, because it's human nature to do this, but it's really not helping you at all when you think about it.
09:13
I've had friends heal in a few weeks after their concussion and I really struggled with that, where they would get hurt and I would feel awful but then they'd be okay and I wouldn't be and I didn't get it. I didn't get that. They were okay and I wasn't. So how do you stop comparing to all these people? I learned no two brain injuries are alike. I learned that there's so many factors and unknowns, and I learned how we don't understand that much about the brain in the first place. So it helped me realize that it's way more complex than I could even imagine. A comparison's only hurt me.
09:50
So do your best to kind of let go of those comparisons. You don't need them. They're not helping you and if you are a survivor that's healed quick, remember that the other people around you that are also being injured might not heal as quick as you. If you're a partner, this is really frequent where two partners have had concussions and one heals faster and one didn't. So they don't understand each other even more now because they've both had the same injury but then they're not okay when one is. So remember that this is a really important thing to think of on both sides of the equation, whether you're the person that healed quick or you're the person that hasn't. So don't compare to others. And let's get to tip number six. This is a really important tip. That's tip number six, and it's about replacing the word forever with the word it's word za, because there's two for now.
10:44
A lot of the time we think of the word forever when we close doors on things and this happens a lot for athletes as well, when they're retiring or taking a step back from a sport or putting in the past. But nobody said that when we close that door we had to throw away the key. We could always go back. Maybe we can't, we don't know that, so maybe just use the word for now. I'm not doing this for now instead of I'm never going to do this again or I'm changing my life forever. It doesn't have to be forever. We don't know that. Research changing brains change. Things are constantly changing.
11:21
Sometimes, all of a sudden, we come across a therapy that changes our life. Some symptoms just start to get better, and I have to say that because that's kind of how it felt, like it happened for me some days. So just remember to replace those words and in your own vocabulary and also in your thoughts when you say, oh, I'm never doing this again or I can't do that, it's out of the question. No, we don't think that way. We don't use the word forever. We don't use the word never. We use the words for now. For now I'm not doing that because it's not good for me. For now I have to consider my health. For now I have too many symptoms. Use the words for now rather than forever. It really helps by changing our mindset and changing those words so it doesn't feel so definite and it doesn't hit us as hard and you really never know.
12:10
Let's get on to tip number seven. Tip number seven might seem really Simple, but I'm saying it because sometimes we just need to hear it and that is keep trying. The best thing about this time is how much research and things are changing, is how much we're learning. So keep trying. Do a new therapy, do a new exercise, nutrition more. Keep trying. It takes the right combination. You could do two therapies and an exercise that you do, any type of exercise. We always talk about movement here, nutrition and whatever else you do for your head and your symptoms. But maybe it's not the right combination. Maybe you need a different form of exercise, maybe you need two different therapies, maybe you need different nutrition, maybe you just haven't learned what else you could do. So remember, the right combination of putting them all together is really important. Symptoms can be connected. My reading trouble and I trouble equaled my headaches a lot of the time. The perfect treatment might be the next one you try. So keep trying. Do not give up. It's okay to take breaks, like we've talked about on the show before, but don't give up because you never know what combination might work for you.
13:25
Let's get to tip number eight. Tip number eight is planning rest days. Now, this might not work, depending on your lifestyle. If you have a lot of obligations kids work things like that but sometimes planning rest days doesn't have to be the whole day. Sometimes it can just be a period of time half a day, an hour, anything like that. The trick about rest days is you may get away with pushing for a while.
13:49
Say, we're going around in a circle and it's just getting smaller and smaller. But we're going around the circle, we're doing an event, we're doing daily life and we're good, and we're good, and we're good. And Then, because we've planned no rest days and our brain has not caught up, our body is not caught up. Eventually that circle crashes and it crashes really hard and, if you're like me, these crashes usually end up in the hospital. So think about it. What can I do Around an event so that I can be successful? For me, I went to a concert in September that meant napping before the concert so that I was successful and got through the concert and had a good time. If I didn't have that nap, I don't know if I would have made it, but that prevented me from having a crash the next day. So this is where the planning can make things easier. Prevents the crashes.
14:37
Rest days help us. You know, if you know something will burn you out, if you know it's gonna flare up all your symptoms, try to give yourself some rest, a rest period of time. Maybe you do an appointment and you need an hour after to just Relax. Maybe when you go to work and you're taking time off for the dentist, but the dentist flares up your symptoms. Try to book it at the end of the day so you can just go home, or try to book where your lunch break is so you can rest after.
15:02
Think about these things. This is where planning ahead is really important and you just can't forget it. Honestly, you can't keep pushing yourself to the extreme point all the time, because it will catch up with you, and I'm sure you've learned this before. So think it through a little bit more. That extra planning can really save you, and I'm not saying it always will. There will be some moments where your cash has happened, no matter what, but try, try to prevent them as much as you can. And let's get on to tip number nine. Tip number nine is also really important. Okay, they're all important, it's just a fact.
15:40
This is about making adjustments. So that's how we think we've figured it out. It takes time to learn what works and what doesn't, and I'm sure you do know that quite a bit by now. Maybe not, but I'm sure you're learning about it. But sometimes we check everything off. We know symptom management, we know what to eat, we know our triggers, we know our supplements, we know how to exercise, we know our mental health. We're planning ahead All these things that we're doing it right, we got this.
16:07
But sometimes things change All of a sudden. You have a new symptom, new triggers. Your symptoms change. Maybe they feel different, maybe stress, maybe your perspective changes, something stops working. And that'll happen, especially when you're dealing with this for a long time. So don't let it discourage you.
16:24
Navigating illness constantly is tough and it constantly changes. So it goes together. And it usually tends to happen right when we think we've figured it all out and we think we're going to get a break. So think about it ahead of time. Know that if this all goes wrong, that's OK, it's going to suck, it's going to be hard, but we figured it out before. So tell yourself that you can figure it out again. That really helps sometimes, just telling ourselves you know what? I've done this before. I figured that long list out and maybe stress is happening and it's changing things. But if I've done it in the past, I can do it again. And if you're still in that first phase where you're learning how to do all this, sometimes you can learn it and then they'll stay kind of the same. But don't be afraid to make those adjustments, because sometimes we need them. Sometimes we get so stuck telling ourselves that this worked, this worked Well. Sometimes it doesn't all of a sudden, and that's OK, just means we've got to try some other things again. So don't be afraid to do that.
17:25
And let's get to our very last tip, number 10. And this is tip number 10. And that is about loving it, and I mean loving life or just loving the little things. You can still love your life while ill. How do you do that? Maybe try to find something that you love to do. Fit it in each week. Try to find something that you love to do at home that's easy to do, that doesn't flare up your symptoms. Sometimes this is a challenge, but I believe you can do it. Sometimes just writing down things that you're grateful for can help Find joy in the small things.
17:57
I used to really hate my life. Honestly, I was miserable, really depressed and had a lot of symptoms, but I learned that I could love life with all of that. If I can love my life with being chronically ill, you can too. Just take some time, take some perspective changes, a lot of mindset and also some time to figure it out. So don't rush, but just believe in yourself that you can do it. You can love all this Well, maybe not all this, but you can love life while you're going through all this. That's probably a better explanation for it. So just think about it and I hope you loved our top 10 tips. Well, 10 tips. There's a lot more to this. If you really love these like telling how to tell someone you're struggling how to forgive yourself it's OK to change. Invisible doesn't mean not real, not comparing to others, the word forever versus for now, how you should keep trying planning those rest days out, making adjustments and learning to love it.
19:00
If you like tips like that, don't be afraid to check out our help series. We have an entire help series where we go into depth on tips like this, where it's like 5 to 10 minutes on one tip, just going over anything. Our most recent ones were on traveling, so make sure you check those out. There is a whole help series that are a video series on concussion connect. If you really like that, don't forget to subscribe on YouTube. We're almost at 100, almost, so please come and do that, because we need to get to 1,000.
19:29
And it really helps us out, and so I hope you all have a great week, and if you notice this episode was a little late, that is because we had some technical difficulties. Me, neither, I had technical difficulties, but it's out now and I really hope that you take it one day at a time, need more than just this podcast. Be sure to check out our website postconcussioninccom 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 and I hope you enjoy it. Thank you, and I'll see you in the next one. I hope you enjoy your week.
The Post Concussion Cookbook is getting amazing reviews!
This cookbook was something I had been looking for! It pairs nutritional information specific to concussion recovery with tips for symptoms, and the recipes are delicious!! My husband and teenager loved it too! Very grateful to have this resource! - Halli
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