Feb. 23, 2020

8 Ways to Live With a Chronic Illness

8 Ways to Live With a Chronic Illness

Hello and welcome to this episode of The Ankylosing Spondylitis Podcast. I hope everybody is doing fantastic as this episode reaches you. It’s been just a great couple of weeks going on here as far as health wise, I mean, I've been dealing with some fatigue, but, you know, I hope everybody is feeling great, fighting the fatigue that you can keep up that good battle against Ankylosing Spondylitis. 

So recently I joined a service that pushes any reviews that that come in from anywhere in the world and I received two of them. One of them was from Australia, and it was from amwave, and this was from November of 2019. And they wrote, 

“I really enjoyed the well researched content and practical relatable tips.”

Well, thank you and amwave, if you are listening, please reach out to me through the website spondypodcast.com I'd love to get in touch with you. The other review came in from the United States and it was left in January 19th by somebody that goes by wiscobri, and same with you, if you are listening, please contact me through the spondypodcast.com website. And they wrote,


”Such a great podcast full of relevant conversations related to AS. Anyone living with AS will benefit from and relate to these open and honest chats.”


That's what it's all about. I just want to do these things so that all of us that have Ankylosing Spondylitis can somehow relate, listen and not feel so alone. And before I do this week's Question of the Week, I thought I would point out that you may have heard an ad that I ran at the beginning of each episode The last few episodes for Joy Organics. I had Courtney Garber on an episode or two episodes ago talking about Joy Organics line of CBD products. So I encourage you to go out there and check there'll be a link in the show notes. Anything that you buy, it does create a small payment back to the show to keep it going. So I really appreciate it. If you follow that link and you're in the market for CBD products, I really appreciate it if you consider Joy Organics. 


So the Question of the Week, this week, I kind of decided to, instead of speaking a specific question, I'm going to pick one that I've seen a recurring theme for over the last several years, and that's something to use of DMARDs or otherwise known as biologics. And what I thought I would do is over the next few months, I'm going to start releasing some episodes, and doing some episodes on the DMARDs. There's really, I think, a lot of confusion out there. And I'm going to start at the maybe the 30,000 foot level, and then work down to a more more granular level of each type of product. I think some of the things that are being posted, may not factually be correct, but I don't know? The best way to to approach each of those. So I thought what I'd do is just anyway, do a number of different episodes, starting off at the real high level about biologics and working down to a more granular level, they won't all come at one time, they will come over a series of, you know, several months. So, you know, if you have really good or bad experiences with biologics, I'd love it if you went out to spondee podcast calm and contacted me to let me know what happened. And are you 100% able to relate that use of the biologic to the condition that developed where you told 100% by doctors that this is what caused it? We know this is what led to it? Or is it just anecdotal that you developed something around the same time that you took the biologic, and you're relating to that I'd love to know and try to see about putting some of that information together for a show as well. So you get no judgment. I don't. You're 100% able to believe anything. You want as far as what might or might not have happened with your medical treatment, I just want to be able to get it all together to share with everybody that listens. So that's this week's Question of the Week. It's really more of a statement of the week. But more to come on it and I look forward to really going more in depth with this topic and finding some great guests to help really delve deep into this subject of DMARDs or biologics. 


In this week's episode, I want to talk about chronic illness, living with chronic illness. It's something that we all experience; there are certain things that we encounter certain things that we deal with, that I thought I would address in dealing with chronic illnesses. There was a book written about 10 years ago called How to be sick by Tony Bernhard. I'll have a link to this in the show notes for you if you want to go over and look at it. Its subtitle of the book is a Buddhist inspired guide for the chronically ill, and their caregivers. And this is really something that whether you have AS, or you're living with somebody or caring for somebody with AS these are kind of eight things that maybe each of us as we deal with our journey in having Ankylosing Spondylitis and what it means to each of our lives, probably really needs to come to grips with. So this article was by Teresa Burchard, and I'll have a link to it as well. She really encapsulated a lot of what I think we all deal with and in one way or another, you know, “life isn't about waiting for the storm to pass” said Vivian green. “It's about learning to dance in the rain.” And that's a quote that the author wrote about dealing with chronic illness, and she herself had dealt with a chronic illness for six years with a Treatment Resistant Depression, little bit different than Ankylosing  Spondylitis, but still something that can cause you chronic pain, disease, mental anguish, everything. So in here she talks about, “I'm shifting my energy from finding a cure, to learning how to live around the illness.” turning to people with debilitating conditions, like fibro, lupus, chronic fatigue, AS, as well as meditation teachers, and thinkers. For instructions on how to manage painful symptoms, here are a few of the items that this author picked up on the way and tips on how to dance in the rain and where to find the courage to try again tomorrow because that's really what it comes down to, is we have to know that when we go to bed at night, we're going to get up in the morning and we're going to tackle that dragon again that disease AS and what it does to us. 


You know, I can remember many many days. When I would be having extremely bad flares and my hips, and it would take me 30 to 45 minutes just to get out of bed, because I had to move so gingerly one leg at a time, because of the just massive amounts of pain it sent through my hips, through my spine, everywhere. So, you know, I've lived with all this different pain through my whole life and there's certain things you you come to grips with, as you advanced with the disease as you age, and it's always a learning experience. 


So number one, Let go of the blame. Former law professor, Tony Bernhard, who wrote the book, contracted a mysterious viral infection on trip to Paris in 2001. In how to be sick, she wrote; 




“I blamed myself for not recovering from the initial viral infection, as if not regaining my health was my fault. A failure of will somehow or a different deficit of character. This is a common reaction for people to have towards their illness. It's not surprising given that our culture tends to treat chronic illness as some kind of personal failure on the part of the afflicted. The bias is often implicit or unconscious, but it's nonetheless palpable.”


I read that and I was really kind of struck by it because it really goes to the core of when we look at Ankylosing Spondylitis or we feel how others look at us, that they somehow view that we're maybe faking it, that we're maybe not in the pain that we are, you know, as a kid, again, I always relate back to constantly being told that I was lazy, and that that really chewed into me and stayed with me for all my years until now I still deal with it in certain areas where I think something all of a sudden, I'm like, man, I can't be lazy. I gotta do this whether I feel like doing it or not. You still do it, and sometimes to the detriment of how I think feel the next day or the next several days. But, you know, that's something we all have those little things that were said to us, maybe not so little. But all the items have built up through years and years of dealing with this. And we really have to learn to let go of a lot of that as best we can. And use that energy that we use to hold on to any of those negative thoughts and use that to the betterment of ourselves, towards healing ourselves. So, however you choose to do that is your own path you have to follow whether that be through therapy, whether it be through religion, whatever process helps you, I encourage you to please follow it. 


Number two, Distinguishing your illness from yourself. I've said this many episodes over and over. I have Ankylosing Spondylitis, Ankylosing Spondylitis does not have me. We all know that in many ways, and I, I'm even reluctant to use this word, we see things of ableism I guess is the best way to put it, where people are doing their normal day to day activities. And look at us funny if we can't if we need to ride a cart through the grocery store, if it takes us longer to do certain things and that type of issue can again build up on you. So it's very important that you work with anybody that's helping you, anybody, your family, your friends, to let them know that you have Ankylosing Spondylitis, but you are not Ankylosing Spondylitis, you are, whoever you are. AS is just a part of you. It might not be a part you like. It might be a part that some days takes up all of the energy and attention and other days not so much. But again, you are not Ankylosing Spondylitis and you have to really figure out the best way to separate yourself from that. So I hope you find it if you share this episode with others that maybe are caregivers for you or others you know with as who maybe don't have as deep and understanding these episodes may help them have a better understanding and allow them as well as you to distinguish your illness from yourself. 


Number three, Address envy. According to Bernhard, the author, envy is a poison, crowding out any chance of feeling peaceful and serene in the mind. I can certainly understand this. I look at people doing different things, whether it be on social media, whether it be on TV, or whether it just be friends that live locally around me looking doing these different things and saying, Wow, I really wish I could do that. I wish I could still do that I wish I could still hike like I used to wish I could still do this or that. And sometimes you have to watch and make sure that it's great to remember what you couldn't, couldn't do, and whatever skill set you had and some particular item, but don't ever if you can, don't ever let that overtake your ability to still interact with your friends, and just congratulate them on what they're able to do and just remember the good times and share stories and laughter with them if if you can, because that's really going to be best to keep you interacting with people. The author wrote, “The antidote to this is a Buddhist term ‘Mudita’ meaning sympathetic joy, joy and the joy of others.” The idea is to be happy, as the author said, from her husband and friends to try and enjoy joy, their joy. So, you know, maybe they're enjoying a great hike that they did, and your friends come and tell you about it and you're able to mentally picture what they did, and enjoy that they're so happy from it. And maybe there's another activity that you guys can all do together next time because you're not able to hike or whatever, you know, Bernhard the author says, “it's okay to fake that term Mudita in the beginning, good will, will eventually enter our hearts and minds and bodies until it's a genuine expression.” So, again, if you are thinking along those lines, you know, as fake it until you actually learn the best way to internalize that and, and be happy for everybody around you for what they can do. There might be things that some of them can't do that you're capable of doing and they may want to be envious of you or better yet learn from you. 


Number four, Honor you limitations. You know, chronic illnesses are tough on people or people that are people pleasers, because the pleasing types, they can no longer escape by in their low maintenance ways. You know, as the author says, “it only took me a few years of suffering, the consequences to figure out that it's far more painful to not assert myself and cause a setback the last months than it is to say, I'm sorry, but I can't honoring my limits.” She says means I choose to stay home from a family vacation. And that type of a decision is painful, it can be difficult to make, because you're missing out on memories you're missing out on time with your family. Those are certainly things you'll never get back. But I know it's very easy for health to deteriorate and need to protect that and make sure that you are again, honoring your limitations knowing what you think, can't do that something that I'm 50 years old now. I'm not sure I 100 percent do that yet. I know I've pushed myself many times and paid for it for days and days where I'm just in excruciating pain. So it's one I work on. It's one I hope you can work on. It's one I hope you can find peace with.


Number five, Connect with universal suffering. This one I kind of had to think about and go through what the author was saying. It really is more of something I've thought about before but anyway, she says there's a famous Buddhist tale of a brave woman whose only son had died around his first birthday. She says to Buddha, “can you revive my dead boy? Buddha replies, yes, but I will need a handful of mustard seed from a house where no child, husband, parent or servant has died. She returned to Buddha empty handed because death had visited every house.” Now when I say this, I don't mean any disrespect to any parents that has lost children. It's really just a, it's an overall reminder and a very powerful reminder that, that suffering is merely part of the universal suffering that all of us as human beings endure. So if I can place my pain in proper perspective, my heart opens and empathy for others. What I really look at what she says that is, my personal philosophy has always been, I'm just glad I can get up at a daily basis and take care of myself, because there's always somebody that's worse off. That doesn't mean that my pains not important. That's not in any way trying to diminish my pain, or to diminish anybody else's pain. That's strictly the way I personally try to keep order in my mind as to how I deal with my Ankylosing Spondylitis. You are certainly entitled to deal with your pain in any way you see fit. So, again, I hope you can come to some way of understanding how you fit into this concept of universal suffering. And what we have is a bad enough disease, but I hope you're able to as you deal with it, put it in perspective of what you're dealing with. 


Number six, Use your pain for good. This one you kind of say what, Rick Warren, pastor of the Saddleback Church in Orange County, the five love lessons, I think, is what it's called his book. He said, I'm certainly not going to waste this pain, about the sudden suicide of his son Matthew in April of 2013. One of the things I believe in that God never wastes are hurt, and that oftentimes, your greatest ministry comes out of your deepest pain, whether you're religious or not. What we can take away from that is that we We have our deepest pain with ankylosing spondylitis. I know I've had many times where I'm just excruciating pain. I'm up all night. And I'm sitting there and it gives me time to reflect, as best I can, on my personal situation, what I can do to not only cope with my pain, but can I help anybody else? Whether you have ankylosing spondylitis, or maybe it's just a person that needs help putting their groceries in a car because they're dealing with a young child and getting them in a car seat, and maybe the weather's not as nice or the weather's hot or whatever. There's all sorts of little ways that you could benefit other people without having to even think about what as is done to you are doing to you. And so, use your pain to come up with a way for for good. That's just all I can do is hope that you take out of this show. Some way to stop. Think about when you're in your deepest pain, and you're trying to deal with it. How could someone best help you? How can I help you? How could it just a phone call to do we want to talk when you're having a lot of pain? If so, reach out to me on my website, provide a phone number. And we'll talk through your pain, whatever it is that you're needing, you know, let somebody in your family know, let a friend know. Reach out on one of the communities on Facebook and ask for some connection with people. There's always somebody on those forums.



Number seven, Let go of expectations. Anyone who's been sick for over a year, they know the disappointments of new treatments that promise to be yet or the cure of, you know, that might end this nightmare. And we see this all the time on the Facebook forums, you know, should I drink celery juice? Should I go to a vegan diet? Should I go to an all meat diet? Should I do this? Should I do that? There are all sorts of things being thrown at you. I'm not saying any of those things are bad. Just make sure that if you get so excited about one thing, even if it does not help you at that point, that doesn't mean that's the end of all the options. Good example. I'm now on my third biologic from doctor. The first two, they worked okay, but not long term. This third one has been fantastic now going on almost two and a half years. So if that first biologic treatment doesn't work well for you. Don't despair. Don't get down in the dumps. I know we all want the first thing that comes out to work. But move on. Let's try something different. Let's see what the next option is to help you in your quest to lessen the pain and slow down the progression of Ankylosing Spondylitis. She writes, “our suffering arises from our desire for certainty and predictability” says Bernhard, when we try and let go of our yearning for control, we can begin to know peace within. She writes, “imagine living in a world where we've let go completely, and it's okay. If we can't go to that family event. It's okay. If a medication doesn't help. It's okay. If a doctor is disappointing, just imagine inspires me to let go a little, then it's easier to let go a lot. And every once in a while, I let go completely and momentarily bask in the glow of that blessed state of freedom and serenity.”, let go of expectations as best you can. 


And then finally number 8, Find your tribe. You hear that said a lot. But really, that can be just as simple as going to any...