The Podcast is Back!
Show Notes:
The Post Concussion Podcast is back and concussions still suck! Let’s be real! We’re so excited for another great year full of guests and creating awareness. In today’s episode, your host, Bella Paige, reflects on the wonderful community of Concussion Connect and answers some of the many questions she has received from members. Tuning in, you’ll hear Bella break down some of the dilemmas that people with post-concussion syndrome face, along with helpful tips and strategies on how to handle them. She reflects on how she reacts when people try to relate to her post-concussion symptoms and how to respond with honesty and compassion when their good intentions miss the mark.
She also discusses the many feelings she experiences when hitting a new milestone, like her birthday, especially when she is struggling with her health, and what it means to have your feelings validated as someone who has post-concussion syndrome. To hear Bella’s thoughts on the many questions she receives from Concussion Connect, be sure to tune in today!
Key Points From This Episode:
Hear Bella’s answers to some of the questions she’s received on Concussion Connect.
Bella’s thoughts on when people try to relate to your concussion symptoms.
How Bella treats moments of celebration when she is feeling ill.
What it means to have your feelings validated when you have post-concussion syndrome.
Why getting broad spectrum blood tests done can give you valuable insight into your symptoms.
The value of treating your symptoms rather than your concussion as a whole.
Why it’s important to do your own research.
Remembering that things may get a lot worse before they get better.
The importance of trusting your medical team and always asking questions.
Why living with post-concussion syndrome is like being blindfolded on a rollercoaster.
Advice on how to treat each day as a new day.
The feelings of care and concern that Bella has for others living with post-concussion syndrome.
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Transcript - Click to Read
[INTRO]
[00:00:05] BP: 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.
[DISCLAIMER]
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.
[EPISODE]
[00:01:14] BP: It's the Post Concussion podcast with myself, Bella Paige, and we're back. I am so, so, so sorry for the delay, I had a computer malfunction. I ordered a new one, that arrived broken, and then the replacement took over a month to arrive. So, three months of no computer. But it's all okay, because the podcast is back now, every week, until the end of next June. As long as my health stays on track, and my fingers are crossed, because it has been so far, and I'd like to keep it that way.
Now, if you've been on Concussion Connect, then you've heard some of these things over the past summer in our support groups. But I think some of the topics are really important to cover. So, one of the big things that gets brought up a lot of the time is people relating to you. For example, I had chronic headaches. You could have chronic dizziness, fatigue, all these types of things and people always try to relate to you and I don't think it's them being mean. But they try their best.
For example, I would say, “Oh, my head is really hurting.” And someone would go, “Oh, yeah, my head really hurts today, too.” Or, “Oh, I know what it's like I get headaches sometimes too.” I always encourage everyone to be really nice in these situations, I guess. Because they are trying to be thoughtful, they are trying to relate to you. But the biggest line I always remember is I'm very thankful for them trying to relate to me, but they don't understand. They don't understand me and I appreciate that they're trying but a headache once in a while, is not the same as having a headache every day for seven years, or one year or month, or just the excruciating level of pain that comes along with concussion headaches.
So, just remember to be thankful for people trying to relate to you. But it's okay that they don't understand you because they're trying, and that's that. It's not that much to say on that other than like, “Thank you for trying, but you really don't understand what I'm going through”, because it's not just a headache, and it's not just back pain, and I'm not just tired, I can't get out of bed, I can't function. I got up and had breakfast, and I'm going back to sleep until dinner. It's chronic fatigue, it's extreme, and trying to explain it to people is hard sometimes because they see you and you're smiling. The invisible aspect of this is something we're going to be talking about forever. I feel like, but that's okay, because we're working on it.
Now, I got asked the other day, a few questions on Concussion Connect, and I wanted to go through some of them. One of them was how do I celebrate when I'm ill? It's something I never thought of, because I just remember being in a lot of pain, and not really thinking about celebrating. But I remember even events were really tough, the holidays and things like that. But for example, it was this individual's birthday, and they said, “How do I celebrate my birthday when my whole life feels like it's changed?” I find birthdays, a lot of people get a lot of reflection. I just had my birthday in September and it can be great and hard at the same time, because you start to look back and you're like, how far have I come? But when you get ill, how far have I come and sometimes feel like how far have I gone backwards in the last year.
So, it's okay, don't beat yourself up and celebrate in any way you want. Nobody said a celebration has to be big. Nobody said it has to be over extravagant, as long as it's something where you enjoy it, that's all that matters. And maybe it's not what you did last year. Maybe last year you went to a bar, or you had a huge party or went on a trip. And maybe this year, it's you sitting on the couch with your favorite snack and watching a movie with your friends. That's okay, too. It's just important to remember not to beat yourself up for what's happened in the last year, when it's time to celebrate events, because it's not going to help you. That's as easy as it gets. It’s just going to make it harder. It's just going to make you upset. So, try to just celebrate in any way that you can. If you need someone to talk to, don't forget, I'm here through Concussion Connect all day, every day.
So, the next thing I want to talk about was validation through people. Now, this is something I – it took a long time to get here, and that's because I've been ill for a long time. Not that I would consider myself really ill anymore. But for example, I was in a wedding just two weeks ago, and that took a lot out of me, because before that I went to a brain injury conference in New York, and those days are over 12 hours long, sitting in conference rooms, listening to information and taking notes and trying to meet people and all those things. So, long days traveling and all that. And then a wedding, which required days of setup, long wedding days, take down, all that. And then my body shut down.
And then Monday, after a lot of my friends, everyone called into work that day, and my one girlfriend said, “If I'm tired, you must be exhausted.” It was kind of a nice validation to understand that. My tired is more than your tired, and it's not anything to brag about. It's just reality. My tired is very tired, and your tired is just tired. And I'm not unvalidating other people's exhaustion, but when you have overwhelming, overstimulating few days after head injuries, your tired is real. It's not, “I'm getting out of bed.” It was, “I'm in extreme pain, my head hurts. I overdid it.” The one day I was up for 22 hours straight, I think and I was exhausted and anyone would be exhausted. But it was a really nice feeling to be validated that mine's worse, and sounds bad. But it felt good. So, I thought I would talk about it.
So, there's a lot of things I get asked about, and I kind of just wanted to go through some of them just today, just to bring the podcast back, and then we'll be back with guests. Back with solo episodes, packed with everything. There are a few surprises this year that are coming, and hopefully I can get them all launched, not when I want to, but at some point. So, a lot of people ask treatment or supplement suggestions, and it's a very tricky question, because I am not a medical professional, never claimed to be, never will be. And so, I can't really give you suggestions on what to try because I don't have the answer. You can try all these things. That's why I bring guests on to provide information about different techniques and different specialists, and different types of therapies that are out there.
But I can really recommend is to get your blood checked. And not just the generic panel, get everything checked. Convince your primary care doctor, convince your concussion team to check what's obvious. What can we see? What's wrong? Why are we guessing when we could just test for it? So, I always advice, if they offer testing to you, do it. Do the all-day testing where you're going to kind of hate your life, because testing can give you answers. And testing can give you areas to treat. I always say, treat things by the symptom. If you have headaches, treat the headaches. If your eyes hurt, treat the eyes. You don't only have to treat it as a concussion because concussion is too general. Because everyone's situation is so different. So, you really have to narrow down by doing all those tests. What am I struggling with? What matters to me? And how can I start working on this today?
Don't forget, everything can be connected, so my headaches were a lot from my eyes and things like that. It's important to remember that too. Once you find these treatments, because let's be honest, there's a few out there, but some of them are kind of not something I would advise to do, and then some are incredible, and the research is phenomenal behind them. So, how do you figure out which one works? I always like to say be optimistic and give it time. If they're recommending pencil push ups and that's all they got for you, I highly recommend finding another medical professional that has more experience in the industry or is more up to date with the current research, because we've gotten a long way from that. And of course, if you don't have a medical team, those types of things can be great for you. Exercise can be great, but with technology nowadays, the advancements have gotten so far, and I think it's so important to realize that some medical teams just aren't up to date, and they're doing the rest. Don't discourage them for doing it, just do your own research too. And don't forget that some things make it way worse before it gets better.
I know that sounds terrible, but eye therapy is one of them. When you're doing eye therapy, the first few weeks, month plus, can really suck. I know that sounds bad, but it really can. It can be exhausting. So just remember, maybe it's getting worse, but it can get better. But be careful. Because some things I've taken, like medications, they make it worse, and then it just gets a lot worse. Trust your gut and trust your medical team. Do your best and ask all the questions. Never be afraid to ask questions, and track your treatments. When you start a new treatment, keep track of everything. Of course, you can do treatments together, but don't overwhelm yourself. You don't need to do 15 different treatments at once, because that's just exhausting. Pick of the things you want to work on and work on those and talk with your team. What is our focus today? And where do we want to be in six months? If that's our goal, then let's work on those things and see what happens.
Now, all these symptoms that I've been talking about, they're really tough, because it's like a pretty big roller coaster to be on. And it's probably the longest one I've been on in my life other than life itself, and it's really hard because a lot of people don't see it. I talk about that a lot, and I laugh about it, but it's really painful. It's really hard to cope with how much of a roller coaster it is because it's so unpredictable. It's like you are on a roller coaster. But you are blindfolded and maybe turned backwards, because you don't see what's coming. Once in a while, if you start to learn triggers, it's like, “Oh, the blindfold lifted today.” But it comes right back over your eyes. So, how do you handle that? This roller coaster that twists and turns and go up and down, and people look at you and don't understand because they don't see the roller coaster you're on. They just see that one day, you're great, and the next day you're not and they just judge you for it. Or don't believe you, which is infuriating and I'm sorry, and that's why Concussion Connect exists, because we all believe you. We all believe that you are struggling in whatever way that you are and that's why I really like it.
But some things that can help is try not to compare day to day, because it can get really hard if you go okay, Monday was really bad. Tuesday, my eyes hurt. Wednesday, this happened. Thursday, this happened. And I'm not saying don't track things because that can be helpful too. But if you really start comparing, it's so tough, and try to take each day as a new day. Have the smallest amount of hope that the next day will be better. And even if it's not, try to have that same hope for the next day. I say, live one day at a time, all the time. I've been saying it for two years now. Go me. Now, I've learned to do it almost too well, and here is an example.
Just the other day, I stopped at my sister's house, and I was really exhausted, and I was sitting there. As I was about to leave, I said, “I'll see you later this week”, because I always go by because she has her kids and I love them. And she goes, “Tomorrow.” I was like, “What do you mean tomorrow?” She's like, “Tomorrow, your birthday dinner is tomorrow.” And I was like, “Right, tomorrow.” Because I haven't looked at my calendar. I don't know what I'm doing tomorrow until I look at it before I go to bed and she just looked at me. She's like, “What?” And that is how much one day at a time I live.
I live today and then I check what am I doing tomorrow? And once, I glance over the week or the month, but I try to not obsess over each day because I found it really hard. Because days start to jumble into one too. I couldn't tell you, a lot of the days that I woke up like, “Is it Monday? Oh, it's Saturday now. I don't think I did anything but had a bowl of soup.” And when you're in those challenging times, it's really hard to deal with the roller coaster, because the roller coaster is just like, you're just at the bottom and it takes a long time to climb back up. But I know you can do it, and I promise you can do it, because I did do it. Sometimes I question how, but I do have some tips and tricks on how to do that. Or at least, how to keep going. That is something that I can help you with, because it's really hard to keep going with all of this, and I haven't been on here for three months, and all I do is stress about how everyone is doing, even though I don't talk to all of you all the time. But that's okay.
It’s not really stress. It's more like I hope everyone is doing okay sort of feeling, and I don't like that there's so many people out there struggling with this. But that is the reality. And gladly, more and more researchers are getting into the field of concussions. So, love that. How do you cope with the roller coaster? You just hang on and don't let go? Don't let go of the roller coaster. It's quite the ride and it's good, and it's bad. But there is good on it. So, don't forget that part. And something some people really deal with, others don't. But it's how do you handle the pressure from others to get better?
People are always like, “Oh, you're not better yet?” It's like, “Oh, thanks.” Or, “Wasn’t that concussion like two years ago? Or wasn't that car accident years ago? Or you just slipped on ice? What do you mean, you're still not feeling better?” All of those. There's probably like – I could think of like a thousand right here on lines people like to say on why are you not better yet. But remember, you have value as a person, whether you are ill, or not, or whoever you are. So, don't let other people give their opinion on that, because they don't know. And the worst is when other people have had a concussion as bad as the sounds. But when they've had a concussion and they bounce back, then they really don't get it. I find they get it less than people who've never had a concussion. Because people have never had a concussion have nothing to compare it to. But people who have had a concussion, who bounce back quickly, like I did after a few, they just go, “Well, I was fine a month later. Why aren't you?” And it's like, “Oh, yeah.” Like, “Yes, I know, you were in a worse accident compared to me. But that's not how brain works.” And then you could give them a whole science lesson and exhaust your brain. But I don't really recommend doing that.
But they don't understand. And don't forget, that's not on them. As we've talked about, this is very difficult to understand when you haven't lived through it, and don't get me wrong. My siblings have lived through this in a different way than I have, but they still don't always get it. I have my anger days that I've talked about before, and my mom is the most validating person when it comes to that, about how my whole entire life got rerouted because of this, and my siblings just go, “Oh, yeah, you didn't get what you wanted.” It's like, “Well, it's not really that I didn't get what I wanted, it's that my health prevented me from getting what I wanted.” And that was the only thing in my way, and that's really challenging.
So, just remember to mention to people or take note of small improvements, even if they don't care about them. Keep track of them yourself, because small improvements matter too. And if you feel like you're in a spiral where everything's getting worse, or you just need someone to talk to, I strongly recommend joining Concussion Connect and our support group, because it's a wonderful group of people, and you'll get all the validation and no one will question you while we do our weekly updates. And you say, “Today was another bad week and tomorrow was another bad week, and the week after that, and the week after that.” No one judges you. We understand why every week can be bad, or why trying to find the good in certain weeks feels impossible, but I know it's there.
So, the podcast is back, concussions suck, I still hate them. That's my personal opinion, and I'm very glad everything is back. Because I really miss doing this to be honest. I do hope you've all had a wonderful summer and start to fall, because it's been a long, three months and I can't wait for you all to hear what's to come this year. But I'm not sharing that yet. So, make sure you subscribe because it's coming soon, and just keep holding on because that's what we're all here for. If you're a family member that's listening to this, you've rock. Or a friend or a provider because all of you matter just as much, and you help us all get through this every day. So, thank you, and thank you to all my listeners who are back or anyone who is new. after the short break. Well, long break. I am so happy and I can't wait to talk to you all soon.
[END OF EPISODE]
[00:19:51] BP: Need more than just this podcast? Be sure to check out our website, postconcussioninc.com, 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.
[END]
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