It’s easy to take what others may say to heart. We need to remember that only those who walk in our shoes know what we feel like.
Don’t worry what others may say, You Do You!
Lupe & Brian: [00:00:00] Welcome to another episode Sjogren’s Strong
[00:00:01] This is Brian.
[00:00:02] And this is Lupe.
[00:00:04] And this is your podcast discussing how to live an active and healthy lifestyle despite diagnosis of Sjogren’s.
[00:00:10] And before we get into what we intend on speaking about today, you might think that this sounds a little different. Well, Lupe’s schedule has changed, and it is much later in the evening than we normally record.
[00:00:23] So I brought home some equipment and we are actually sitting in our backyard, enjoying the cool shade.
[00:00:30] Sipping constantly and staying hydrated.
[00:00:33] So, from time to time, you might hear a little background noise, and we are going to do our best to stop and pick back up once, maybe, that loud car passes. But, uh, you know, the birds chirping, this might be better.
[00:00:45] You know what we have here, a lot of brows and they go, cacoa-cacoa.
[00:00:50] Is that what they do?
[00:00:51] I think so.
[00:00:55] So, uh, that is the reason for the, you know, the audio being a little different, today, than usual.
[00:01:01] We’ll see how it goes. If not, you know, we have to figure something out.
[00:01:06] So that’s week we spoke about the importance of community.
[00:01:09] And this week we want to talk a little bit about controlling what we can control when it comes to feelings.
[00:01:16] So obviously we can control our own feelings, but we cannot control how somebody else feels about us.
[00:01:25] And what we mean by that is, you know how sometimes we are in flare or we are tired or, you know, we do not have energy. We have to cancel plans. And sometimes people do not understand why. Because what we feel, what we are going through, it is inside, right. It is invisible. You cannot see it.
[00:01:46] So, uh, people might think, Oh, you know, you just do not want to come to my party, or my kids are not important to you. But no, it is not, it is not that at all.
[00:01:57] And then it is funny to give you an example, um, we went to my daughter’s apartment and hung out for a few hours. And one of my buddies took her flying and, and made the comment of, sure you can hang out with your daughter, but you cannot come hang out with me.
[00:02:17] And yeah, we are longtime friends., so it is one of those things I can punch him in the eye, and we can drink a beer and laugh about it. But, um, you know, most truths are spoken in jest.
[00:02:30] And, you know, we have to remind people from time to time that we only have so many spoons, in our case, Lupe only has so many spoons and waking up and taking care of our chores and going to my daughter’s and hanging out for a little while and coming back was, you know, our max output for the day.
[00:02:52] So, you know, that is what we did the days of hopping from friend to friend and house to house and bar to bar they are gone.
[00:02:59] But you know what? I do not think that is, it does not really only apply to me, right. Uh, with Sjogren’s, I mean, in general, you only wake up with so many spoons, right. And sometimes people that do not have an auto immune, they can take a little nap and get their spoons back.
[00:03:17] But, uh, I mean, they just kind of go away also as you get older, right? So. and you work, and you have things to do, and sometimes you just cannot do it. And a lot of people do get their feelings hurt or they think you are, or they think that they are not important or other stuff is more important.
[00:03:43] Yeah. And that is not always the case. And, you know, from time to time, we have to remind people. But if they are the type of individual that does not believe you and is going to, you know, stop inviting you or what not, that is okay. And that is why we talked about community last week and how important it is to find people that is in a similar or same circumstance that you are
[00:04:12] It reminds me of a post that I made a while back and it says, just be you. And if people do not like it, find new people. So, which is what I have found, new people, new friends, you know. New people I could go to in this community. So, they are my new people.
[00:04:33] So a little bit, you had these similar types of conversations with your sisters.
[00:04:37] Yeah. So, the thing about it is. I mean, I do not really talk about my Sjogren’s much, much with my sisters, with my friends. Um, the people that I really tell, I have Sjogren’s, is like, if we are going to do outdoor stuff, you know. And I do not want to bonk and they are like, what the heck is wrong with you? You know, I just, um, I tell them, but I do not talk too much about it.
[00:04:59] Um, but, um, like my sisters, I do not think they understand. They just, Oh, we will take a nap. Or they don’t understand because they don’t, for a couple of reasons, I think, Because when I’m in flare or I don’t have energy, thankfully I’ve been feeling really good for the past several months, but you don’t. go out. so, they do not see you that way.
[00:05:25] But what are they really going to see? Cause you are tired and sleepy.
[00:05:29] What is there to, they cannot see it physically, right?
[00:05:33] And its funny cause you have a brother that actually listens to the show and we’ve walked and hiked with him before and he kind of gets it.
[00:05:41] My brother totally gets it and I have a nephew, he listens to every episode and my brother and my nephew, they both comments, you know? And they are like, Oh, that happened. So, you know, they just make comments that I know they listen. So, it makes me feel like they care. And I know that even though my other family members do not listen, I know they care, but maybe they just do not like talking about it. I do not know.
[00:06:06] They’re also more accommodated. They understand if you are leaving early. They understand if you show up late. They understand, if you say, yeah, no.
[00:06:14] Yeah, no. So, what I do, and, um, I think I have mentioned it before, when I’m ready to leave, and like, if Brian and I are together, I just kind of give him a nod. Right? And he knows I am ready. So, we are like, okay, we are out.
[00:06:30] But if I am by myself, I just kind of disappear. Nobody knows, nobody knows where ah, where I go. And then I will get text messages, did you leave? I sure did. Cause I am just done, you know, and I do not want to take the time and energy to say bye to everybody. So, I just kind of vanish.
[00:06:48] Well, I mean, I do not think it is all the time and energy. It is every single person you say goodbye to you know.
[00:06:54] Next thing you know you’re there for another hour.
[00:06:56] Yeah. You feel like you have to justify why you want to leave, which is also, you know, part of this whole conversation, don’t feel like you have to justify. If you have had enough, you can excuse yourself and leave.
[00:07:10] And know this, to quote Janet Church or the Sjogren’s Foundation, No is a complete sentence. You do not have to give explanations. You do not have to do nothing except say no. And that is it, period.
[00:07:27] Yep. And then you do you. I mean, and that is in all walks of life, you know. Do not ever feel embarrassed. Do not ever feel like you need to meet somebodies’ expectations. ,you do not. You need to do you; you need to manage you. And, you know, some days are going to be better than others and it is okay.
[00:07:49] Speaking of some days, better than others, I have been feeling really good, lately.
[00:07:54] And she got up and cleaned over the weekend.
[00:07:57] Oh, I never, I never had that much energy.
[00:08:01] She crushed it.
[00:08:02] The dishes concept forever, and I do not really care.
[00:08:07] I do because I do the cooking. But she is like, I am going to go through my drawers. I am like, let me get the bags.
[00:08:14] Oh, I had enough energy, over the weekend, for just one drawer. And then I am like, you know what? Cause it takes me so long. It is like, do I want to keep this? Do I not? What do I do? And then it just takes me forever.
[00:08:26] So I am sure everyone knows what a carabiner is. And they are the little key chain style. It is not a Caribbean or that can bear weight, but she has like probably 30 up. She just cannot throw them away.
[00:08:40] They’re different colors, different sizes. I used them when we go hiking. I like, I like dangle he is on my purse, you know. So, I danglies.
[00:08:48] So as of today, I am working from home again. So, Friday they announced that, you know, COVID is kicking back up and I was very excited about working from home. But that was short lived because they changed my hours.
[00:09:07] So, I was working seven to 3:30 and now I have to work 9-6, which I’m not happy about. But, um, I woke up early and we live right across the street from a park. So, I walked for an hour. And I felt really good. And then during my breaks on lunch break, I walked also.
[00:09:29] So, today I walked a total of seven miles, just walking during the lunch and breaks and, you know, right before I clocked in. So, I am definitely making the most of the new hours.
[00:09:42] So buddy and I, we use the same CRM that keeps track of our emails and calendar. And when we need to speak to whom. And all of that.
[00:09:51] And at the end of the day, we take a snapshot of our agenda and typically it should show nothing’s past due, nothing needs to be followed up and everything that you were supposed to do today was done. And on occasion, we do not always make the mark. There might be one or two things and one of those three columns.
[00:10:10] But, we call it an accountability check. So, I shoot in my screenshot, he shoots me his screenshot, and we just use that as a tool to keep each other accountable.
[00:10:21] Lupe, today posted in our IG stories, her walks. So, you know, we kind of challenge you, let us use this as an accountability check. And whether you, you do not have to go live in IG stories but make a post on whichever platform you prefer.
[00:10:35] Facebook, Instagram, or Twitter. Of, you know, what you did today, how you are feeling today, and it does not have to be exercise. You know, if you were able to get up and take a shower and make your meals and eat, and you are good on your pills, you know, and that’s all you had today. Awesome. Share it. Tag. Sjogren’s Strong in it. Let us all help keep each other accountable.
[00:11:01] So I mentioned in a previous episode that me and a coworker, we started walking during our lunch and our breaks. And, you know, even though it has been really hot, some days are better than others and some days are hard, you know, because it’s been so hot. But I noticed that I have been, that my joints are getting really stiff and it hard for me to Fasten my bra, TMI, right.
[00:11:23] And I am like, what is going on? And I think a lot of it is because I stopped exercising because.it got hot, you know? And I am like, no, if I can, I have to work through it. And I feel so much better since I started walking.
[00:11:39] So for me, that helps me, and I was able to walk seven miles this week and last week or whenever. But and I know that a lot of people cannot do that but try to do what you can. It helps so much. I do not feel as stiff.
[00:11:56] Yep. Well, the body and you know, there is some rock stars out there that are battling Sjogren’s that still run. Awesome. Good on you! Share with the group, what you are doing.
[00:12:06] And there might be some people, again, that can manage their day. They can take their shower; they can do their meds and that is all they can give. Awesome. Share your day. Because everybody has had those days.
[00:12:17] There’s days where Lupe has not even done that. She will wake up, come to the recliner, sit down and she is done and that is okay. And you know, I will prepare meals. I will bring them to her. I will, you know, do everything I can so she can get through that day. And those are far and few in between, but that has been a reality.
[00:12:38] Definitely. Um, I remember not having energy to reach for a glass of water, you know. And just to not do anything. I just get my butt off the recliner just to go to the restroom, you know.
[00:12:52] And that is okay.
[00:12:53] Sometimes that is how you can do, you know? So just do you.
[00:12:57] To wrap this up today’s episode is you, do you. And let us utilize this platform, Sjogren Strong, to help each other stay accountable.
[00:13:08] What else it is that you can accomplish today? Tomorrow? Whenever, post it, tag us, let us know. We are here to support where here to build community. We are here to be us.
[00:13:24] Until next time, sip constantly and stay hydrated.
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