Y'all, I have so many thoughts on this subject. I literally recorded a full episode every day this week. I did research and wanted to offer something that would be helpful. In the end, the thing I find most helpful is the reason I started this podcast - knowing I'm not alone and spreading love. I know I sound rough and it's appropriate for the week that included two er visits, one complete with an ambulance ride, another funeral of a beloved person in our life, new physical therapy, and weather that challenges the best of them. Dear friend, you are not alone. Not in the darkest of times, ever. I will use a ladder and sit in the well if you need it. Promise me, we'll make a date to watch the sunrise. Call or text 988 - https://988lifeline.org/
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
Y'all, I have so many thoughts on this subject. I literally recorded a full episode every day this week. I did research and wanted to offer something that would be helpful. In the end, the thing I find most helpful is the reason I started this podcast - knowing I'm not alone and spreading love. I know I sound rough and it's appropriate for the week that included two er visits, one complete with an ambulance ride, another funeral of a beloved person in our life, new physical therapy, and weather that challenges the best of them. Dear friend, you are not alone. Not in the darkest of times, ever. I will use a ladder and sit in the well if you need it. Promise me, we'll make a date to watch the sunrise. Call or text 988 - https://988lifeline.org/
Zebras are the rare type of spoonies often affiliated with the Ehlers-Danlos patients. Please check out the website: https://www.ehlers-danlos.com
If you'd like to be a guest, please reach out to Ann and Mrs. Labeezy at TaleofTwoZebras@gmail.com
Giving credit where credit is due: Christine Miserandino revolutionized the chronic illness community by sharing her Spoon Theory with the world on her blog: https://butyoudontlooksick.com Because of her contribution, those suffering with chronic illness are often referred to as "Spoonies" and we often refer to energy stored and expended in units of spoons.
Ann Anderson:
Hello, and welcome. Got any spoons, I'm your host, Ann. I may not sound like it. But I am the same person just with the fall weather, taking a hit on the old vocal cords, I've been warming up for half an hour, I don't think you would have been able to understand me 30 minutes ago, but any of the Nevertheless, I'm not a doctor. I'm also not a psychologist, just putting that out there for this episode. But I do share my experiences, tips, tricks, and life hacks of dealing with chronic illness, disability and pain. This past week, we celebrated World Mental Health Day. And I had so many different things I wanted to talk about, and actually did create podcast with some of the subjects, but didn't feel like they were helpful. Yes, they definitely told a story, my story, and let people know they weren't alone. But I feel like with mental health and chronic illness, we get into some really dark places. And I hope you know you're not alone. But I also know that in those moments, we need somebody to throw ladder down into the well and climb in and help us just be with us. So I thought well, I'm gonna do some research on this. And look at the percentage of spoonies who deal with anxiety and depression. Now it's a it's a good correlation. It doesn't have to just be EDS, but chronic pain is really it goes hand in hand with depression. And I thought da, of course it does. When I had been recording earlier, I was going to be talking about the different factors that add to our depression factors like all the medical appointments, all the medical gaslighting, the chronic pain, the isolation, that the illness and pain, cause the that grief that we have, that we like cycle through at different points in life or the day for the person that we were, or wanted to be just that loss of self relationship woes, which I would say even if you have a very good relationship, because I do its work. It's not like it's just automatic, I don't expect him to read my mind. I can't read his mind, we are going to have to communicate. And as this is chronic, this is going to be a lifetime. And guess what, it's not static, it changes it's minute to minute, day by day different things happen in we have to be working regularly, to communicate to support one another, just to remind and focus on love. So in the articles that I was finding, and when I was doing the research, yes, chronic pain and depression are linked. And then the next most common thing that was spoken of in the articles was that the idea that CBT cognitive behavior therapy can help chronic pain, possibly pause for anger. Why am I angry? Well, I did. I did make a podcast, I went through all 15 cognitive distortions. And I tried to change the example from what was given in the articles to something specific to chronic illness. And yes, you can apply cognitive behavior therapy to chronic illness. And it's depression. You know what, you can't apply it to pain. Now someone's going to come out of the woodwork and argue, hey, now, there's Cymbalta because depression hurts. Yes, I acknowledge that depression can cause pain, a low grade ache, a hurt, and when you are not not moving, when you're in bed, there can be more pain associated. I guess I just feel like that's an ache. That's a hurt. That's like maybe a five if it's there or lower. I'm talking about the pain of of EDs of regional complex pain syndrome of lupus. This is not the same thing. And also its its source is not the depression. The source is the disease. So while you're working your CBT and your distortions, you can maybe apply that to your chronic illness and try to help you keep positive and, and not go to worst case scenarios. And if you're not going to doctor's appointments because you're reading their mind and making assumptions, well, we can work on all of that. But it is not going to change your pain. Let me rephrase that. I can't speak for everybody that is not going to change my opinion. My personal opinion is this is yet another tool in the medical community's toolbox to lay any and all responsibility on the patient, when they are uneducated on the illness or feel like they can't help or don't have the time or I don't know, as I was thinking about this podcast and different things, I thought to myself, you know, this could, this could be an opportunity for response, because right now, I am hearing a lot of, we're sorry, we don't take patients with EDS, they're too complicated. If you do see the doctor, they will politely bow out. And I think I've talked about that, because they're not comfortable with the level of care and complexity that a patient has. And at this point, I think maybe my response is going to have to be, are you seeing a counselor about that? If you're not feeling comfortable doing your job? Maybe, maybe you're just not very good. Or seeing a counselor could really help. Have you tried CBT? I think there might be some cognitive distortions there that are leading to your uncomfortableness. And while you're uncomfortable, Doc, I'm writhing in pain. Who Trump's one or the other? Well, it's the doc, I can tell you that right now. And yes, that is my smart, ask yourself, would I be able to actually do that in appointment? Probably not. But I'm getting closer. As I get turned away more and more, as I seek to find help. And actually, I'm equipping the doctors with knowledge, I'm going out of my way, paying out of pocket to get the newest, latest greatest information, testing, and infer the scientific data that will help them figure me out. And so that we can find a solution or there's not a solution that it's going to be cured, but a treatment that might be effective. And when I'm giving them this information there, I've never seen this before. Well, Doc, again, this is science, this is cutting edge. This is new, maybe be excited that your patient has done the work for you has brought you a resource that you could look at and utilize and possibly lessen the uncomfortable feelings of helplessness because there's nothing that you can do. I don't know. Maybe just maybe, see, there's that smartass self of mine. I really, and that's another thing that we can talk about is when you're in the patient doctor arena, there is a very fine line, you must walk with heavy handed respect. Because if you don't, and you are in the medical arena, they have all the power. And they will write things in your chart that will make it difficult, they can send or suggest you go to a psych ward. Now you're gonna say and you're catastrophizing? No, no, no, that stuff is real bad stuff is stuff that happened to me. And do I assume that that's going to happen every time? No, that would be catastrophizing, if I assumed that because of one or two bad experiences, that that also always happen. No. But it does keep me in line. Like I said, with a heavier hand of respect, because I need them to respect me. I need them to take me seriously and listen to me and not blow me off. I need to like elicit kernel of empathy. And that is a tough challenge at this point. And if we find a look at chronic illness rather than chronic pain, and look at the medical community and what type of therapy might help, in my experience, it's DBT dialectical I can ever say that word behavior therapy. So because that is the therapy that helps deal with trauma, and so many people in our community have medically induced trauma because they've gotten to the appointments, they've been minimized. They've been gaslighted. They've had just terrible experiences in the surgical world with healing with the actual surgery, either getting it or afterwards, the whole, minimizing the pain, not taking the appropriate steps. Maybe for an EDS patient, they should be putting the stitches Closer, closer together. That's a best practice. But they don't do that they're in a hurry. And then we end up ripping out our stitches. That's a common thing I hear I was thinking I was unique, because the doctor says, oh, no, you can't do that. That never happened. Well, Doc, it did happen. Still didn't believe me, and then come to find out in my zipper community. That's a regular thing. Huh? Go figure. Maybe we should have been addressing that. Yeah. So let's go ahead and challenge. How would DBT help chronically ill patients slash pain patients. I don't think that any of these tricks are going to help the pain, they're going to help you come back to the real world, because one of the tricks that we have that works very well, is disassociation. We have to totally completely leave our body. Go to a younger self. I don't know. We're not there for a while we disconnect. Because what else are you supposed to do? The lidocaine doesn't work. And we've told them that. And it's just, that's where we have to go because we're not being respected. So our families might know that we disassociate and they might be able to bring us back into the real world a little bit faster. But how do you tell the doctors that? Because I know when I tell the doctors that they get wide eyed like, oh my god, this is a real honest to god psych patient, should we really be doing surgery? Should she making this shit up? Yeah, of course, that's exactly what's happening. Dr. G, that's exactly what I need. I'm being honest, telling you that this has been a roulette of, of hardships in the past with my procedures. Again, you know, those tools that I'm trying to give and acknowledging that we're on a team right now, I'm real close. I had to do that. The other day. I the pain from occipital neuralgia is choice. So choice. And I say that with dripping sarcasm, anybody needs a sarcasm flag waved I'm waving at huge, huge sarcasm flag right now. It is not choice, it is probably some of the worst pain and disassociation was going to happen. I was in the ER, and it was just it was a blue moon. It was insane, chaotic, loud. Everything that could make this headache worse was happening. And I was and I told the nurse, I might just dissociate for a while. If you're needing me and I'm not responding, here's some things you can do to bring me back a little bit faster. I rocked that young nurses world i i totally threw something that she wasn't prepared for, I guess. How do I prepare? I don't know. She's the medical professional. Do nurses need to know this stuff? I don't know. I don't know if it's in their training? Do doctors need to know this stuff? Actually, probably not as much as the nurses do, because the nurses are the ones who are doing 90% of the work. Yes, I cheered nurses Way to go guys, you are doing the work. Probably another reason why the articles the articles are done by doctors. And they're getting their their their research published. And going with CBT or even DBT. At this point, there's a couple of win wins for the doctors. One, it takes the issue off their plate and puts it squarely on the patient and or the patients therapists if the tandem to if they're successful in any of that none of it requires medication. So with the opioid crisis being the hot button, you know, we don't want to give pain patients people who live their life in pain. We don't want to give them medicine that would help and I will harp on it. You will hear it in other episodes. How would you feel if you're diabetic? And they said, you know, you can do a lot with your illness by just watching what you eat. So we're going to need you to do that because we're simply not going to give you insulin that's a medication that costs a lot of money. You need to come to us regularly for prescriptions and the monitoring it not just gives That's a lot to do. So, yeah, you just watch what you eat, and you'll be fine. I think there would be uproar. But they want us to say, you know, it's chronic pain. You have to learn to live with this. So go to therapy and learn CBT and have a perspective, let's more positive, your Outlook should be more positive, and then you will have much as much pain, I think is what they're saying. is ridiculous. It makes no sense. But yet, here we are. And we're at the halfway mark. So take a break, you can pause for anger. I really love Rage Against the Machine, if you like that, or whatever, by Godsmack. That is some really good angry music. So have fun. And and come on back. And we'll keep talking. Welcome back, rip the mic, rip the stage rip the system. I was born to rage against him. Yeah, that's good stuff. In all seriousness, which this podcast has been serious, I am I, I tried to put some light heartedness to it. Because, yep, if we focus on this stuff, if we dig in the dirt, it's going to get very dark, I'm sorry. And if you take your focus right now outside and put it on the outside world, you may be more depressed at this point, because of what's happening in our world, and the Israeli Palestinian Palestinian Hamas type of situation. This isn't a political podcast, I don't want to get political. On that note, I think we can all agree that the images and the situation are extremely disturbing. And that can lead to a hopeless type feeling. And if you've got chronic illness and chronic pain, that might be a factor in making things worse. And I say that, because I know, as someone who deals with chronic pain, that we wear a mask, we wear a mask, when we're dealing with the outside world, typically, or just in our day to day even with our family to function, we don't focus on the pain. And that, that masks that takes some energy, it takes some spoons. And if the TV is on, and they are talking about the topic of the day, that's probably going to be one of them. I was around a live well, and a much very much an adult when 911 happened. And I remember, back then there weren't the cell phones, like we have today that were readily accessible with the internet in your pocket. But at every home, the TV was turned on. And these images just were on repeat, and you had the talking heads. And it was highly recommended that you turn the TV off and agreed. There isn't much we can do for them. You can pray, you can find a nonprofit or an organization that you wish to contribute to, if that's helpful. In my world, the best thing for me to do is to go and make my world smaller, to focus on myself and my husband and my family. Those acts are born bred hatred. And I do not want to be any part of it. And so I'm going to focus on love, I'm going to focus on those that I love. But in all of my dealings, even with the medical community, I will be softer, I will be trying to make sure that I give all the graces so that we can love each other. And even when there's tension. I mean, this goes for further regular days. I understand that they are not the medical community, I understand is not just in the medical world, they are people who have real lives. They go to their families, they could have family over in the war zone right now. They could be putting on their mask to deal with my sorry ass, only to go home to see if there's an update on their relative if there's been any sightings of them, you know, and that is the mask that they have to deal with. And in their professionalism. I'm not going to know that that's a stress to them. Because that's not something they're going to bring into the office. So that saying that Be kind, because you never know what battle people are fighting or everybody has a battle that they're fighting. It's true. It is. And that's, I guess, the best advice I think I can keep in mind when I'm frustrated, and I'm working on this, does it help when they're telling me they're uncomfortable, or they don't know what to do with the information I've given them. And all the stuff I talked about before? No, it doesn't. It, it doesn't. But our world is complicated. Our world is about as complicated as my health. That's a joke sarcasm flag. So there are so many things to keep in mind, and to be giving graces about and to love each other, and to find your community or find a community that you can talk to, and that type of thing. So we can recognize that stuff. And I really want to bring it back to the recommendations of what has worked for me. And kind of back to chronic pain, chronic illness, and then depression and anxiety, and our community and I hits, it's the same type of lens that I have when it comes to mobility aids, in that so many people are so resistant to use them for a short period of time when they need them, that they will hold out. And then they will not heal as fast, they will not get better. And they will end up needing those mobility aids, sooner, full time, they might still be stubborn and not use them. And that's detrimental to their health. If you take that lens, and you apply it to chronic pain in and specifically depression and anxiety, I definitely think we need to be talking about it, I definitely think that we need to involve therapists, I think we need to be very honest. I think if you're in a dark place, and you're having I call them dark thoughts, it's really hard if you're having suicidal ideation. So the idea, you don't have a plan, but you're really thinking it would be better if you just didn't wake up tomorrow, that things would be better off that, that type of thing, not really wanting to be here. And just knowing that people would be better off without you. But there's no plan that suicidal ideation. And if you're there, you got to talk about it, please. It's scary, I get that I have been there. And for me, my reason for staying is very simple. I made my my husband a promise that I wouldn't go out like that. We've been married 30 years, you guys know that. And I have struggled with depression for a while 29 of those 30 years, probably be for them. Poor guy. He didn't know what he was getting himself into when he said I do. But he took those vows very seriously. And because of that I am the beneficiary of a very loyal, very loving, very wonderful relationship in my spouse who will move heaven and earth for me and telling him that I'm in that dark place is it can be hurtful. I mean, doesn't make sense, right? I'm thinking you'd be better off without me. No, that's not at all where he's at. But in acknowledging that a lot of times, letting him no that's where I'm at is what I need to do to get past it. Because if I don't say it, it ruminates in the ruminates and then maybe instead of just thinking there'll be better off maybe you start thinking of ways that there would you could make that a reality maybe and and then we're in a we're in a worse spot. So that is a hard conversation. No, no bones about it. And maybe there's a pre conversation to have, maybe use this podcast as your jumping off block. If you're if you're there now, and you're thinking they'd be better off well. Yep. If you've been there, but you're not there now. But you didn't want to talk about it, then let's talk to him today. You know, Hey, honey, at listen to this podcast. And sometimes I have these feelings, I'm not having them right now. But I really want to be able to talk to you about them. But I know how hurtful and it can be or, you know, just, it brings up bad emotions and want to focus on the fact that we're a team. And I'm sharing so that I can get out of this dark spot faster. And and be be here for you, I want to be here. I really do I want to be here with you. If that conversation happens before the I want to be here conversation, it might lessen the blow, and it could offer some suggestions. Also, having that pre conversation, you will be in a better spot, you're, you'll be in a better spot to problem solve. Or think of things that might help. When you're in the dark spot. Your loved one will likely say well, what can I do for you? What do you want me to do? What will help what will make it better? And there's a lot of times in those dark spots? We have no clue. If we had a clue, we wouldn't be there. And that's what I'm talking about, you know, throwing the ladder down. I'm not suggesting the platitudes of, well, have you been in the sun today? No, don't do that. I mean, hey, you and your your significant other take a walk a stroll, holding hands in the sun. Great, that's one of your plans. Just throwing down suggestions when I can't move and I don't want to be here is not going to be helpful. Taking a ladder, coming on down and holding my hand and maybe using a fireman carry to get me out of this. That's going to help there is that that you can do that you can have. And I'm living proof that it's possible. That's somewhat, too on the nose living proof. Yep. If you are there, if you're in the dark place, if you're thinking the world, your family would be better. Without you. Listen to me, please hear my words. It will not be better without you, your family, your loved ones, your community, they want you here. And if you can make it through today, if you can make it through tonight, and watch the sunrise with me and get a path a plan of how we can get out of the well. So many times we don't see the path, we don't have a plan to get out of the well. And if there is one, it might seem overwhelming. And I get that. And that's a fair feeling. And so we're going to need to call in reinforcements. And there are reinforcements. And I will right now off the top of my head, I can't think of the suicide hotline. I want to think it's just 888. But her 811 I'll have to come back. But that's what we need is that path i My path is if I'm in that dark space, I go to my husband, and we talk about it. And we can go from there because we've had the pre talks and I've been in the in the psych ward more than a few times. And so that is something I want to avoid. And that's where my life is at. But your life is worth it. You are worth it. And I am worth it. I can say that. Not all the time. But I'm gonna say that now and I'm gonna ride myself when I'm in the well. So if the TV is too much, turn it off. Listen to some music. Call a positive friend or someone who can listen empathetically and not minimize and not shame and those type of things. Find that nugget. And we'll get through today. And then we're gonna get through tomorrow. And we're gonna take it day by day. And I promise I don't make promises lightly. I promise that things will get better. Will you be cured? No. Will everything be sunshine and daisies? No. So what I'm saying But this feeling this overwhelming feeling that is consuming and really has a hold. And and it's thoughts are winning right now. It's logic is winning right now. It's not right. And if you can hold on, give me a day, we can come up with some new logic and a plan. And we'll be here one more day. You are not alone and you are loved. Send me an email. Got any spoons.com Let's chat and I will talk to you next week.