Spring Health Check-In: Small Changes, Real Results

Listen to the episode “Spring Health Check-In” hosted by patient advocate Abbie Cornett. In this episode, we’re talking about small, realistic changes and the emotional side of healing, because sometimes even the smallest steps can make the biggest differences. Our guest today is Sharleen Lucas, also known as the RN Next Door, a health coach who is passionate about helping people soothe ongoing symptoms associated with chronic illness so they can live fully. After eight years at Hospital Bedside, she transitioned into health writing and coaching, where she now helps individuals use food, lifestyle and rest to nourish their bodies and better manage their chronic illness. 

Transcript

Welcome to today’s podcast. My name is Abbie Cornett, and I am the patient advocate for IG Living magazine. This podcast is brought to you by IG Living to give readers the chance to hear directly from healthcare experts on topics that matter to them most.

Abbie: Spring is here, and for many of us, it feels like a natural time to reset, to reflect and check in on our health. But if you’re living with ongoing symptoms or care fatigue, even the idea of starting fresh can feel overwhelming. Today, we’re talking about small, realistic changes and the emotional side of healing, because sometimes even the smallest steps can make the biggest differences.

Joining me today is Sharleen Lucas, also known as the RN Next Door, a health coach who is passionate about helping people soothe ongoing symptoms associated with chronic illness so they can live fully. After eight years at Hospital Bedside, she transitioned into health writing and coaching, where she now helps individuals use food, lifestyle and rest to nourish their bodies and better manage their chronic illness. Sharleen, thank you so much for being here today.

Before we get started, can you tell our listeners a little bit about yourself and your experiences, and a little bit what led you to focus on helping people manage their chronic symptoms in more sustainable ways?

Sharleen: Yeah, and of course I’m delighted to be here, Abbie Your questions are always really spot on, and you dig pretty deep today into some stuff that people are going through. So I’m pretty honored to be here. My journey for health and chronic issues started in my 20s. I traveled to a country where I should not have brushed my teeth at the sink and swallowed that water. I knew better. I was supposed to be drinking bottled water and boiled water. I got sick for about 24 hours, and then I can’t remember exactly how much later it was, but maybe up to a year when I got home, I started having debilitating chronic fatigue, joint pain in my hands and gut issues, brain fog.

Clearly, something was wrong, but I had no idea. I was young. Again, I was probably about 23, 24 when this happened. I was athletic, energetic and I was sleeping hours and hours every day while I was trying to build a program for work. And I went to the doctor and all they could kind of come up with was, well, we think maybe I have rheumatoid arthritis. And so I moved forward with that as my working diagnosis. And I was always somebody who wanted to live life as naturally at the root as possible. So I always was searching and so grateful for the conventional system, as we both are. 

Abbie: I said without a doubt, for me it’s a combination of the two.

Sharleen: Agreed. And this is exactly my story. And so I started to search on my own because I didn’t really get great answers at that time. This is probably like 1999. I think some of our tools are better now. And so I kept searching and had a couple of friends who were fabulous at helping me — at least with food and start to understand things differently. One of them had a license where she could run a test and find out if there were any parasites growing in my gut. We found nothing.

And so I just continued to move forward. And I really had help with food and, yes, supplements and rest and just kind of tried to do my best. Fifteen years down the road, I realized that I was not healed, and I was down to like chicken and rice, and I thought, OK, you need to go back and do something. Cause I had kind of just moved on because we don’t want to slow down and have to face these things, right? And so we want to live. And so, finally, I went back to a doctor. I found a guy who was an ICU doc who started his own clinic with integrative and conventional mixed. And he kind of smiled empathetically and said, I’m from a country like that, and we have better stool tests. I think I may have mentioned this, I don’t know on the last podcast, because you don’t want to talk about stool on a podcast. But that’s how they check for parasites. Everybody knows it’s a part of the whole deal.

And so he kind of smiled, and he said, we know how to better test. Because they just had such a wider range of parasitic infections. So he tested more and found a good little single cell amoeba called B-hominis blastocystis hominis. And we killed it thankfully with traditional meds of flagellum and bacterium. And then I had a long road of healing.

And that’s the part that the conventional system wasn’t as great for. And so I really had to continue my searching and my studying and my finding the right tools and the right practitioners. And everybody understands if you’ve been in a place where it’s not quite really a well understood condition yet, or we’re working out our treatments and we’re trying to get our head wrapped around things. 

Abbie: There’s also the part that everybody is different. What’s right for you on those non-conventional methods or what you need in the way of supplements is not necessarily the same for what someone else who had the same condition was.

Sharleen: You are 100 percent correct. And this is why, and I’ll probably mention this several times. This is why protocols are great for initial treatment. What do we do with this particular human and this disease? We know this and this works, but no human fits a protocol perfectly. And we have to personalize this stuff. And this is why I became a coach, because I want to help people personalize. 

So I had to dig deep. What are the tools? What’s trustworthy? What do I try? Where do I put my money? How much do I try this thing? Who do I trust out there? And so I just spent so much time, because I’m a seeker by nature, boiling down what to trust and then how to apply it. Then I was going through nursing school, by the way, when we discovered the B-hominis.

And so, then I saw all the beauties of the conventional system and the weak points. And I was like, we need somebody to help people for the long haul, not just the treatment. We need help for deeper healing wherever we can and whatever parts of the body that we can. And how do we do that? How do we build health? Not just treat the condition and symptoms, but how do we build health? And there are studies that are showing that health coaches help to increase the, what’s the word I’m looking for, the effectiveness of the treatment and all of that conventional. We’re seeing that all the chronic illnesses that are treatable are reducing better with health coaching, with wellness nurses, which is probably a better term for me. And even with people who have an unresolvable chronic illness, how do we support their body around that unresolvable part if it is until our science maybe finds a resolution. How do we support the health of their body all the way around them?

Abbie: But it only makes sense that if you have an illness, you can still have to be the healthiest you can be for the treatments to work and for that illness to improve. I know I mentioned spring and being a time of reset in the opening, and that a lot of times people with chronic ongoing symptoms or care fatigue can feel a lot of pressure to try and do more or to be better. Why do you think that it’s an all-or-none approach to health can actually make things a lot harder for patients? Because we always want everything to be: I’m going to do this. It’s like our New Year’s Eve resolutions. I’m going to give this up completely. Instead of more realistically saying, I’m going to be healthier over the course of the year. Not, I’m going to give up all fast food.

Sharleen: It’s again such a great question because I think all of us who want to pursue change and intensely sometimes just dive into deep, and there’s a reason why it doesn’t work as well. And it’s not just psychological, that’s the beauty. There’s actually self cellular health things that we can point to that show that we need to align with our body and do things in a way that works for the body, not just our deepest current passion, which gets intense when you’re in the depths of despair. And I love your point to care fatigue because this is for caregivers as much as anybody. And you’ll have to tell me if you have a better description, but to me, the all or nothing is I am going to do everything in my power to do everything right at once and restrict everything wrong all at once. And I am going to do this to perfection.

Because if I could just be more disciplined, my life will restore or I won’t be such a burden. Or my value is placed upon my level of ability to be perfect. I’m just in the depths of despair, and maybe I did something to make this happen. But we don’t know how or why this happened. I’m just going to do everything I can to switch it. And what’s so interesting when you get practical.

I’m a really philosophical person to a fault sometimes. And so, all my life, I’ve tried to bring that philosophy down to practical application. And when you get practical, all or nothing is just impractical because it presupposes perfection. You can’t be perfect. Your body does not have the ability to be perfect. And so, it’s just super impractical.

And so, if it’s just helpful to think in those terms, it’s not possible. And the other problem with it, by the way, I don’t want to forget, I love this line: Perfectionists never win. And when I heard that one day, I was like, that’s so good, because I don’t want to be silly about my expectations. And when I heard that, I’m like, you’re right, because you can’t be perfect. So you’ve already set yourself an unattainable goal, right?

Abbie: Yeah, completely. I always look at it kind of like this: All your laundry is never done. Unless you’re not wearing clothing, it’s not possible. I mean, you can’t have a perfect house. Everything kind of devolves to entropy over time. I mean, that’s just the way it is. You can’t have perfection. You can strive to be better.

Sharleen: Yeah, exactly. And we need to know what we have power over. Not that we’re so powerless over maybe a part of us, but what is going to be maybe not able to be changed. 

Abbie: What can we work on? What can we do? We can’t do it all. What is the realistic approach?

Sharleen: To do that, we have to understand the root of human nature and the root of human cellular ability, literally, our physical ability. How can we partner with our body rather than force it? And that’s the problem when we choose perfectionism or when we choose an all or nothing, we’re actually striving for something unachievable. And so, therefore, we put stress not only on our mind and our spirits and our emotions and our relationships, but we put stress on our bodies. Yeah, our cells literally cannot operate at that level. I think there is a really great analogy that I love when I think about the cells. So the best root cause for healing right now is centered inside the cells. It goes even deeper than the cells, but they’re little workers. They actually love to work for us. When our body is breaking down, they are still working so hard for us. And if we can get that mentality because they’re designed to survive, they have the mitochondria, which I will not dive into. I could talk for hours about the mitochondria. But, we are almost certainly based on the DNA structure of a ring. We think they were bacteria prior to symbiotically binding with their own body. And so they’re brilliant at survival. So they’re this gift to us to help us survive. And so the image that I think of is ourselves are like factory workers in a big manufacturing plant. Any good manager knows that they cannot push their workers too hard. They also know that they have to give all the resources that their workers need to thrive. And they also know that danger within the plant is going to cause fear and it’s going to cause pullback.

So if you don’t have the resources, if there’s danger within that whole plant, you can’t optimize function. You can’t optimize production. And so your cells are the exact same way. Because they’re such survival, brilliant survival little mechanisms for us, they sense all the resources, they sense any danger that’s happening in the body. They don’t know what the danger is, but they’re sensing the nervous system, they’re sensing neurotransmitters, they’re sensing lack of light, they’re sensing lack of nutrients, they’re sensing lack of energy, they’re sensing infections, they’re sensing toxins. I make a joke that they know us better than we know ourselves because they’re such sensors. And so our whole role in building health is to partner with those cells. How do we nourish them to such a degree that they begin to just work like mad again? And they love that. And that’s when they start to really thrive. They can’t do that when there’s stress in the nervous system or when there’s lack of resources.

Abbie: That brings me to the follow-up question. Realistically, what does that look like for a patient? Because when we’re talking about cells and mitochondria, we may be diving a little bit too much into the science of it. But for patients, what does that realistically look like on a day-to-day basis?

Sharleen: And what’s the practical application if it’s not all or nothing, then what do we do? So understanding the resources within the body can then tell us: What should we do to partner with that resource? And so we’ll talk about baby steps in a minute. Baby steps are steps; they’re still getting somewhere. And so I used to climb like Mount St. Helens, because I lived north of Portland and you’d climb up one step or two and you sink down one, and you step another one and you sink down half of that one because you’re in thick ash. But you still got to the top. And so that’s the image.

Abbie: You know, my great grandmother always said: It doesn’t matter how little you are going forward, it just matters that you keep going forward. And it’s a good analogy for life too.

Sharleen: It’s so, so good. We have to. Part of the nervous system thing is you have to rest in that you cannot do it all. And that’s OK. And when you can embrace that and lean into it, you make more progress over the long haul because you’re just that turtle making slow progress rather than the way it looks. Yeah, I mean, it’s true. And I think putting it to the test for oneself is the only way you can really find out whether it’s true. And how do you put it to the test? I do like the term all or something. That was Betty Rocker, who is a great fitness gal online who will work for some people. But she’s like, all or something. And I think that’s true. It’s not all or nothing. Both ends are too extreme. And so a little something, that’s baby steps. Then sometimes, and again talking more about baby steps, but sometimes you can do a small all or nothing in one area. And that could be, for me, this isn’t a great example, because I don’t like to restrict food as much as I like to focus on how much we can include. 

But I do have a dairy problem, and it’s the protein, not the lactose. And it causes me brain fog, asthma, joint pain. I mean, it’s brutal. So I kind of go all or nothing on that one thing. But I don’t put it on my friends. If they make me something with dairy, I gratefully and joyfully eat it. But, so you can kind of do little pockets of it. You can also do more if you have a partner and a team or a spouse who is going to partner with you. And that I think is really amazing. Still not all or nothing, but it’s a little bit more. And so, that’s why I’m so big into having a partner, somebody who can help you.

Abbie: So when you’re talking about small changes, how long does it typically take to start seeing the health benefits of those small changes? And what’s one simple change that you recommend to your patients to start with? Because a lot of times people can do a small change, but they’re overwhelmed about where to start.

Sharleen: Let’s get a little bit more practical. And I’m going to have to get a little philosophical. The first step is truly noticing your current habit or the thing you want to change. What do you do currently? 

We all know that you can’t expect a baby to run when it doesn’t really have the awareness that it has arms and legs. And so that baby has to first like, whoa, what are these things? And then they’re grabbing hands, they’re kicking mom when they’re changing diapers, pretty soon they’re rolling, then they’re crawling and grabbing on the couch, and then they can walk and run. But to walk and run, you have to stop, and it’s kind of frustrating sometimes, I think, because it feels very so baby step that it’s like, oh my gosh, it’s going to take forever. But you have to pull back, and you have to notice what you’re doing. And I think awareness or consciousness is the first step to change. Consciousness before change. 

Abbie: I would agree. I mean, you have to identify inside of yourself what it is you want to change most first. And you don’t have to do it all at once. But for some of our listeners that may be feeling overwhelming and they don’t know where to start. What are a few foundation habits that you recommend that they look at like sleep, nutrition, hydration, movement? What do you feel makes the biggest difference? Or is that strictly based on the individual? And how do you go about helping them identify that?

Sharleen: Yeah, it’s a great question because it is so, so personalized. And so we really work on baby steps, noticing first, I want to assess. So people need to sit down and assess themselves. Notice where you’re at. Be really honest. Take a hard look at yourself and be honest with what you see and what you want to do. And then, the next step is so personalized, like you just said. Sometimes we start with food because they’re just like, the whole nutrition world is so confusing. I had one client recently who said, what am I supposed to eat? 

Abbie: I remember when eggs were bad, eggs were good. I remember when milk was good, milk was bad, milk’s good again. I try and eat holistically, just a little bit. I don’t do any aversion or like I’m never going to eat this again unless obviously there’s an allergy or something like that, but trying to balance.

Sharleen: I agree, and it’s unfortunate, but if you really dig deep, our nutritional science is probably the most biased unfortunately. There’s just a lot of opinions going on. And so getting back to, you know, what did the earth make? What can my body handle right now within my condition? And how much food that is absolutely as real and close to the earth as possible can I eat? And that takes some teaching, but that’s the easy way to look at it.

Abbie: I read a fascinating book on the different types of nutrition that actually hunter-gatherers had way better nutrition than we do now because they ate such a varied diet. And due to our farming systems, we’re now down to three or four top green vegetables, a couple of carbohydrates, and our bodies were meant to have a much more varied diet than that.

With that, what are some of the common mistakes people make with the basics like nutrition or hydration or sleep? And, how can someone adapt those habits that you’re trying to teach them to cover all their days, particularly those low-energy days where they just don’t feel like they have the energy to make a change?

Sharleen: Yeah, and I want to make sure to talk about a few different tools. One of the big mistakes I see in eating, especially in women, is actually just eating too much. They think that they just need to reduce calories, or they feel like they have to focus on protein, carbs and fiber. They forget fat. Fat is absolutely 100 percent way more essential than we ever understood. I teach my clients when we have more time, we teach them why at the cellular level. And we try not to get too deep into the science, but we have to understand at least why fat is so important. And part of it is the membrane of the cell. You can’t have an operating cell without fat, and you can’t have an operating cell without membranes. And then there’s a ton of other reasons. But we are now so confused on fat. We actually need both omega-6s and omega-3s.

But we have to get them from whole food, not industrially created products, because it ruins the fats there. So we need to eat fish; we need to eat seeds. And eggs are great, and dairy is great for the right person. I do a lot of goat milk. We hunt, so we end up doing a lot of great meat, seasonal. And I’m not going to go into this, just trust me if you want, and if you can feel like it resonates, local and seasonal really does end up being the best. And there’s more to that than just environmentally healthy reasons. And so that can be hard in the winter for some people. And so then in the winter, what are some of the quick and easy things if, and stop me if I’m not perfectly answering your question, but so what are some of the easier quick-win tools? And what are some things that people can do when they don’t have a lot of energy? And so again, all of my studying has honestly boiled down to the earth really is more abundant than we thought for our health. And so, that will not resonate with some people until you really dig into the data and the science and you try it out. And so one of those things, as you know, I’m big on sunlight. And so even getting out for two minutes during the day, if that’s all you’ve got.

And honestly, sunrise is fabulous because it really sets our circadian rhythm, and we get really anti-inflammatory rich infrared light. But, all throughout the day, you’re getting different wavelengths that are sending signals to your body. And so that signal goes all the way down to the cells, even into the microbiome, the bacteria in the gut. So long story short, sunlight, if you can’t get outside, ean into some of the light therapies that are but there these days. That is super trendy.

If you dig into the data, it’s super good, great data. But then who is selling a product that’s actually trustworthy? And that’s what I try to help people with because it takes digging and understanding. And then water, our water understanding is incomplete. We don’t just need to eat or, excuse me, drink eight glasses of water a day. We need minerals.

We need water that’s going to get down into the cells and so that the cells produce more water. In order to function, they need healthy water around their cells. And so we need to get water to the cells, not just dump a bunch of sink water to get it into our veins and our arteries. We actually want it to sift down to the cells. So that means we need to learn some stuff on hydration. But just adding minerals. 

And then also vagas nerve stimulation tools. And that means just relaxing the nervous system and triggering our rest and nervous system so that the whole body takes a deep sigh, so that the signals go to the cells of safety. That’s how we can tell the cells that everything is safe and they can return to optimization. They will pull back on their production if they sense lack resources or danger. And so that increases our symptoms when they pull back, because they can’t optimize all their biochemical production, making all their chemicals. And so honestly, even hugging your loved ones, because you’re getting oxytocin and you’re getting infrared light from doing that. 

And so the things that are very common to humans when you get down to it, not as much in the modern world, but just the simple things that make you feel good, it’s actually going deeper. It’s not just psychological, there is a physical impact. Even sitting and breathing, that’s another thing that I’ve been doing. Sit outside for two minutes and just breathe through your nose and out through your nose. And learn to be a nose breather.

One more thing because I just love this concept. It works really well for me, and it’s what I do with my clients. I create an environment to let them rant and rave. We need a safe place where we can unload what’s going on in our brains, because if we leave it on the back burner, our body and our minds are still sensing that. And that signal of some stress back here, things that we’re not getting to or parts of us that we’re not facing, that sends a signal down to the cells that there’s still anxiety going on. So honestly, ranting and raving.

Abbie: I have a good friend who’s a psychiatrist and they recommend all of their patients journal, period. But you’ve touched on this earlier, and it’s something that a lot of times patients feel and their families feel. How do you recommend patients deal with feeling guilty? Whether it’s guilty about being ill.

Even caregivers resenting having to care, though they’re there every day — guilt about not having energy to make some of the changes that we talked about, that all or nothing. A lot of times, you know, and I always write an article at New Year’s about New Year’s resolutions because I think they’re stupid. Now, it’s not that you can’t resolve at the beginning of the year, I’m going to do better. But if you say, I’m going to go to the gym seven days a week, I’m going to work out two hours a day, and then you don’t, you feel guilty. And you blame yourself for not being a good person when you’re just surviving. You’ve set an unrealistic expectation. And we touched on that earlier, but how do you counsel your patients on dealing with those feelings of guilt?

Sharleen: Yeah, it’s such a good question. And when I was first thinking about that, this is again why I think people need a mentor. And whether that’s a loved one or a care practitioner, somebody who can listen. Because I see in my practice, the most power first comes with my presence in the room as they’re talking.

And when I can just get in it with them and I enter into that emotion and that pain at the moment and sit in it with them. I was trained back in the day to sit with patients sometimes and just breathe in the way they’re breathing; match their breathing. And it’s this way of getting into it with them. And so if we’re all alone, all of that stuff in our brain is going to twirl and whirl and cycle and we’re going to perseverate on it all the more. And it’s super hard to turn toward people when we want to enter into our despair. Sometimes the only option, and I have loved ones right now who are in this, and I actually was in this not too long ago. And we have to find somebody, one who can, we can rant and rave with and who will sit in it with us. 

And then I think, so building a team, I think is a really big deal. And then, I hate to, but I think picking one thing that helps us to pull up and out of ourselves, because there’s facing ourselves and then there’s curling up and just getting inside of ourselves. And I think if there’s anything that someone can do to just look up and outside of themselves. I have a friend who went through serious breast cancer, and sometimes she would text me in the middle of her treatment, in the middle of her despair, and she would ask me how I’m doing. That never ceased to amaze me. And I think she found one little tool that helped her turn and kind of work away from all the guilt and the shame and actually try to look outside. And, gosh, I don’t feel like I’m answering your question perfectly.

Abbie: You’re touching more on depression and despair. I’m talking more along the lines of guilt. Because a lot of times people feel like they’re a burden on their loved ones. They feel like somehow they did something. Or if they don’t do some of the things that we’ve recommended, then they’re not helping themselves. Guilt definitely leads to despair. And that’ll bring us to my next question. But guilt and shame are very prevalent. And that leads to the despair. But how do you tell patients to say … you know, and I have a doctor that I work with on a regular basis and he said, these people never did anything to bring this on. And even the people who may have had a lifestyle that caused them to have a chronic illness, how do you get them to step out of that blame as their life coach?

Sharleen: Yeah, and it’s interesting because I think I haven’t developed perfect answers that work for everybody on that. And I literally sit with people and we work it out until we get to the bottom. And always, always, always, we are able to get there and just look at each other and be like, so much of this was not you.

Yes, you brought this part to the table and we can deal with this part now, but there’s no way that a person who is in a chronically ill situation… And I have another friend at home who is in, I mean, just on multiple machines for life. And, I think that a lot of that was abuse. So sometimes we have to deal with trauma. A lot of that was in her past was abuse that just tore her body apart to the point where she gets to the point of serious chronic illness. And so how do we help her dig deeper into that inner place where her self-talk, the work that she’s doing inside, to start to look and see that that trauma? She truly was a victim. And sometimes we are truly victims and learning how to look at that and soothe that and heal that.

Most of my, if not all of my, clients are bringing traumatic life experiences. And whether they have an unresolvable chronic illness or a chronic illness that we can heal or soothe, all of them have some trauma.

Abbie: I was going to say the chronic illness is the trauma for a lot of people.

Sharleen: That’s what I learned. Well, yes. Again, some family members are in the middle of that. And I think that’s why we need mentors. I think we need a team. I just don’t think we can do it ourselves. If I were to give people one recommendation, two, it would be to look themselves face to face, look themselves in the eye, and just be kind and gentle and honest and find someone to talk that stuff through with.

And yeah, and then read Viktor Frankl’s book, Man’s Search for Meaning, because he’s so brilliant in helping people through suffering and finding some sort of meaning in it. Not being unrealistic about the pain and agony, but finding deeper meaning.

Abbie: We’re going to be wrapping it up here shortly. We’ve touched on a lot of good topics here. But a lot of times patients, because of their illness, particularly the patients who we deal with who have immune deficiencies that can’t plan events, sometimes they plan events but have to cancel, or they can’t go in public because of their illness or they have to wear a mask. A lot of times we see these people start pulling back. And they pull back from their families, pull back from their friends, they pull back from society. And we frequently hear, you know, “I don’t even like to say I’m coming to an event because I might have to cancel and then I’m going to disappoint people or they’re going to be mad at me.” How do you get people to stop pulling back and start reconnecting with life, with their friends, their family, with society, without that feeling of being overwhelmed or that they just can’t do it.

Sharleen: Yeah. And again, I think it’s multi-pronged. I think we apply the practical tools that I was talking about to see if we can restore some energy at some level in the healthy parts of their body. And that takes time. But that is a real, real thing. What are the quick wins of helping to support at the energetic level.

It’s really a physics mentality. So our cells are making chemicals, and then there’s energy to do that work. We want to support the energy. And so all those tools that I mentioned are part of that supportive mechanism. And so, in part, finding one little thing that we can do that’s outside of our current situation, if there’s any way to do that. And I think that’s a little bit about that — when we want to curl in — what’s one way we can look outside? And if that means getting outside and sitting in the sun if they can. Or if that means picking up the phone and texting one friend. Something that actually pulls them in a little bit. I mean we’re very important. We should be looking at ourselves. We should be spending time with ourselves.

Abbie: No, I think a lot of times it’s also that they’re afraid of disappointing people or people will be mad at them. So it’s just easy to pull back. And a lot of times family members don’t understand and they are upset with them.

Sharleen: Yeah, and we work really hard at learning how to talk to our loved ones. And because that’s an ongoing challenge for everybody.

Abbie: That’s a really good point. How do you have those conversations?

Sharleen: And again, I think that is really personalized. And so I think also beginning to understand, yes, it’s tough to be the caregiver, but (I just want to be real careful of how I say these things, because I just don’t want them to be sounding so, not superficial, but just easier than it really is; It’s really hard), but our loved ones are seeking meaning in their life as well. And sometimes that relationship of the patient and the caregiver becomes the deepest sense of meaning for us. And if we can honor that relationship and learn to be vulnerable and talk and work things out, that is helping the meaning of the caregiver as well as the patient. 

I also think that in the long run, it relieves back burner worries with everybody. If we’ve got back burner emotions, worries about relationships, that injures our energy and that injures the energy of the caregiver. And so just learning how to be vulnerable and honest, and being gentle with ourselves and not punishing ourselves.

Abbie: And giving ourselves some compassion. You know, I mean, the other thing that I tell patients is if even if you can’t get out, that doesn’t mean you have to withdraw from the world. You know, find a way to stay connected. Is it an online chat group? Is it a patient support group? Is it reaching out? During the pandemic, we learned so many, I mean the pandemic was awful, but we did take some good lessons away from it on how we can keep in contact with people electronically. The big thing I think is, though, the patients and everyone need to give themselves compassion and understanding that they’re not perfect, and some of these small steps can make their overall quality of life better.

Sharleen: Yeah.

Abbie: Sharleen, I want to thank you for sharing your insights and your perspectives today on how to manage ongoing symptoms and care fatigue when it feels overwhelming. And reminding us that even those small steps can help. Would you like to say any closing remarks? It’s been wonderful to have you here today.

Sharleen: You know, I think the only closing remark: I think in dealing with the agony of going through this stuff and feeling like a burden, I think understanding again that the finiteness of ourselves, we can only handle so much. We’re designed and we need to be in relationships with people, and our cells show that; it’s a must. So really leaning into a team and help. And then the concept that your cells are so brilliant. Even in a body that we feel is broken, unresolvably, there are parts that are working brilliantly. I had a friend who told me: “Sharleen, there’s more working in your body than you realize — working really well” — when I was in just the middle of my misery. And I was like, that’s so interesting. And I kind of wanted to punch her.

And then I thought about it some more and I was like, you know, she’s right. I need to listen to that. And that perspective that there are things going right in my body, how do I shore those things up? And what are the little steps? And how do I do that in my relationships? And how do I be honest with myself about what’s deep in me and driving my behaviors? I think those things in the long run help. And the baby steps, if we choose baby steps, just little things that we can do, coming outside of ourselves or trialing a new little natural tool or something. I think those are physical reminders that little steps are OK — that we’re not perfect, that we’re vulnerable, that we can only do so much, that we need to be gentle and smart. We need to be smart about what we’re doing. We need to kind of know a little bit about our bodies to know what to do.

And then it’s OK to be vulnerable with people around us and doing that very wisely and carefully and building the safe people. And just convincing ourselves that this is the best way to go through this, to survive through the misery. And so I think that in general kind of wraps it up.

Abbie: It does. You know, thank you so much. I look forward to having another podcast with you. The last one was great. I’ve had a good time today. Thank you very much.

Sharleen: I love it and happy to come back and continue to be as practical as possible and get rid of the nitty-gritty for people.

Abbie: Thank you again for joining us today. Additional information regarding this podcast can be found on our website at www.IGLiving.com. If you have a question that was not answered, please contact me acornett@igliving.com. Look for the next IG Living Podcast announcement on our website for the opportunity to submit your questions. 

IG Living Advocate is a copyright production of IG Living magazine, published by FFF Enterprises — the only magazine for the immune globulin community, comprised of patients who suffer from chronic illness, and their caregivers.

Disclaimer: The views and opinions expressed by the speaker are their own and do not necessarily reflect the views of IG Living magazine, FFF Enterprises or its affiliates.