Lupe & Brian: Welcome to another episode of Sjogren’s Strong.
Brian: This is Brian.
Lupe: And this is Lupe.
Brian: And this is your weekly podcast discussing how to live an active and healthy lifestyle despite a diagnosis of Sjogren’s Syndrome.
Lupe: Because of what I’ve been going through for the past several months with my tooth infection, we want to talk about infection and fatigue for this episode.
Brian: So, over the past four weeks life’s changed a little bit and hindsight being 2020, Lupe and I were having a discussion last night and realized a few things.
Brian: My observations over the last four weeks have been decreased energy, not wanting to do much on the weekends, just being less active around the house, more sleeping, more napping, more resting.
Brian: And then it comes to light that she has a broken root and the tooth is infected and she needs to have oral surgery to have it removed and she’s on a regimen to antibiotics to get the infection under control, prior to the tooth extraction.
Brian: And once the procedure was done, we realized she experienced a complete shift to where energy is back and she’s more talkative. And we want to go over a few things that we realized, that impacted her, because of a little tooth infection.
Speaker 2: Well, it was kind of a big tooth infection, because you know why? Because I didn’t know that it was there. My tooth didn’t hurt. I didn’t feel any discomfort. And now that I think about it, I’m going to say about a year ago, maybe a little bit less, I went to have my teeth cleaned and the dentist took x-rays and she’s like, you need to have a specialist, take a look at the tooth.
Lupe: And I’m like, why? It doesn’t hurt. Um, so she actually made an appointment for me and I canceled it. And I’ve just been having my teeth cleaned. And because if you go in for a cleaning, they don’t take x-rays, only once a year.
Lupe: So, they didn’t take x-rays. I didn’t complain about anything. So, all they did was clean and floss my teeth. And this last time that I went, because I thought I had a cavity, it wasn’t a cavity, it was build up. But they took a new set of x-rays, it was time for that, and they saw this really big infection.
Brian: So, as the body’s trying to fight off this infection, it’s obviously conserving energy to do so, causing extra fatigue in the body.
Lupe: That’s why today we want to talk about infection and fatigue. And how it affects your body and how you change up your routine to compensate.
Brian: So, in the, we’ve talked about buffer days. How are on usually Saturday we’ll go out and hike and enjoy the outdoors and just hit it kind of hard all day. Well, that hasn’t been taking place.
Brian: We’ve been going out and doing things in the morning and then recovering the afternoon. And then Sunday maybe just taking care of chores and coming home to recover in the afternoon.
Brian: But now that that tooth is extracted, not even a week ago, the infection is almost gone. Yesterday we went out and took care of some business. We had a long drive, took care of some business and then went and enjoyed a local festival in San Diego County.
Lupe: And I feel so amazing. It’s like I’m a new person again. Of course, I’ve mentioned before also that um, I’ve lost about 10-15 pounds of inflammation. And that’s just made a world of difference for me and I feel so energized. I totally really feel like a new person. And it’s just these little things that you don’t realize.
Lupe: But I think for everybody, even if you don’t have a chronic illness, infection is really bad. But when your immune system is already compromised an infection is worse, it really knocks you down.
Brian: And the last few days, she hasn’t even been napping during lunch break in her car.
Lupe: And I’ve been staying awake.
Brian: We actually met for lunch twice.
Lupe: And we walked.
Lupe: And we did walk. We walked from my office up the street to enjoy lunch. And she actually walked from her office to my office and then we walked to lunch.
Lupe: And then I had to walk back to my office.
Brian: Right! So it’s eye-opening, how that, I say little infection, but significant infection, in her mouth really depleted her entire body.
Brian: So, these are the five main things that really came to light because of this situation over the last four weeks. And we want to share them with you in case you’re feeling them or you think something may be going on and you’re triggering one of, or more of these five things that we’re getting ready to discuss. It might be something more than you think.
Lupe: I think some of the topics that we’re going to discuss, I do them anyways, but because of what I’ve been going through, I probably did it more than I used to.
Brian: So the first thing we want to talk about is planning to-dos. For example, if you’ve got two things to do this weekend and they’re both going to require a significant amount of energy, it’s best to plan one on Saturday and one on Sunday. Hoping you can recover Saturday afternoon to handle Sunday. But knowing if you did both of them on Saturday, Sunday you know you’re going to be down.
Lupe: And I think it depends a lot on the activities that you have to do. If there’s something minor, an errand or just something small that doesn’t require too much energy, well for us it is a lot of energy, but if they’re smaller ones, they’re probably double. But for me, I don’t like overdoing it because I will pay for it the next day and not only the next day. It’ll affect me for the next few days. I won’t be able to recover.
Brian: For example, we had to drive down to San Diego and take care of business yesterday. Feeling so good after two and a half-hour meeting that we went and walked in the sun, on the beach, in the wind, a Harbor Festival and we were probably out in the sun for another two hours.
Brian: So that is taxing. And two weeks ago, that would have been done. She would have been asleep in the car, on the way home and probably done today. However, she didn’t even fall asleep yesterday.
Lupe : I did not. Not on the way home, no.
Brian: Which was amazing to me. And then today we went out and spent probably three hours taking pictures, which is something we haven’t done in a long while. So again, we were out in the sun, walking, unstable terrain, taking pictures, the wind. You know, exerting ourselves, carrying all of our camera equipment, carrying things, props to take pictures of and or with. And I mean it’s been an awesome weekend. We haven’t had an active weekend like this in a few months.
Lupe: And today is about maybe mid 80’s and it’s really muggy out and it’s really kind of miserable. But I was able to handle it, which I’m amazed. Again, I don’t want to keep talking about it, but it was because the infection is going away.
Brian: Right. So with her having this dental procedure, family, of course, is calling to check on her and make sure she’s okay. And one of her nieces actually said, you never invite us over anymore.
Lupe : Okay. So, I had my tooth pulled on Thursday and I was there for about 3 hours. They had to clean it and do all these things. And so I decided not to go to work on Friday. And I thought, well, what am I going to do?
Lupe: Uh, I got up a little bit late. And then I spent most of the day at my mom’s house. And towards the end of the day my niece came over and we’re really close and we used to hang out a lot. And just out of the blue she says, hey, how come you never invite me over? Just text me and say, let’s hang out.
Lupe: Which we used to do a lot and go shopping, swap meet, whatever it was. We used to hang out a lot. And I just kind of sighed, because I felt bad. Because it’s been several years that I don’t invite family over. I don’t invite friends over.
Lupe: But especially for the last several months that this infection has been stewing, I just, I don’t have the energy because I just feel like my home is my comfort zone. It’s where I just come and relax. And you know, I don’t want to get to a point where I’m really tired at home. And how do you say, ah, okay guys, it’s time for you to go?
Brian: And taking this a little deeper, when you are feeling fatigued and or flaring at any extent, the brain fog seems to kick in a little bit. And putting yourself in a social situation can be challenging. Because you know you’re going to have to speak, you know, you’re going to miss speak, you know you’re going to struggle to find words. So by excluding yourself, that decreases anxiety and makes you a little more comfortable.
Brian: And then going to someplace to meet friends or family. You can leave whenever you choose. You’re not dependent on anybody there. They’re not depending on you for anything. So you can excuse yourself for the evening and come back home to your sanctuary and rest and relax.
Brian: To where, if you have them over to your home, now you’re in another awkward situation, to where you need to rest. And if that happens, what are you going to do? Sneak away in your own home or ask them to leave, again being an uncomfortable situation. So by meeting people elsewhere, it’s the best of both worlds.
Lupe: And about 95% of the time, if I’m at a friend’s house, at family, I kind of just start sneaking away, without saying bye to everybody. Cause I don’t want to do it.
Brian: Cause you don’t want to hear it. Oh, why are you leaving? Stay. It’s just, again, you know when you need to rest, you need to rest.
Lupe: And as much as I miss hanging with family and friends, I definitely choose me first.
Brian: Which brings us to curling up underneath a lot of blankets.
Lupe: Oh, you know what? I’m guilty. It doesn’t matter if it’s a warm day, cold day, hot day. I want to be under the blankets, under a pile of blankets.
Brian: So even with, as hot as it’s been, windows, open fans running, she’s still under a blanket. That’s her, t’s her wubbie.
Lupe: It’s my wubbie. If it’s cold out, I have a bigger blanket, heavier blanket.
Brian: Heating pads, weighted blanket, heavy blanket.
Lupe: Yeah. If it’s during the summer or not as cold, it’s a small-light blanket. But I still need to have something covering me.
Brian: And it’s that pressure that helps to relieve muscle ache and joint pain. And it’s comforting. Like you’re being hugged. It’s just a safe place to be.
Lupe: A while back I mentioned that I bought a weighted blanket and it’s about 20 pounds and it just cuddles you. For lack of a better word, I’m going to say it cuddles you and you feel really comfortable under it and you fall asleep.
Brian: And then something we’ve noticed the last few months, the clothing that she’s choosing to wear, going to work and or out and about, to take care of chores and have fun, has been looser fitting. Um, she starting to wear and or buy wicking clothes that are meant for outdoor activity, but look suitable for an office environment. And she’s starting to employ that into her pretty much everyday wardrobe now.
Lupe: So I think I’ve always had wicking clothing. It’s been many years now. But lately, with all this extra fatigue that I’ve had, I just want to be really comfy. And so I used to get really dressed up for work, dresses, heels. And now I just, I just don’t want to. I don’t have the energy and I do wear a lot of tennis shoes. I wear Toms, Capris, comfy, comfy clothes and a lot of wicking Columbia stuff.
Brian: Which brings us to her hair.
Lupe: My hair?
Brian: She’s been talking about, I think I want to grow my hair out. I think I want to grow my hair out. And she just went and got it cut. Um, last week, week before.
Brian: And she’s keeping it really short and has consistently been keeping it short. But this brought up the thought over our discussion the other day, about why? I keep short hair. And I’ve always said it’s pure laziness. I don’t want a lot of hair to wash. I keep a little scruff on my face because I don’t want to shave every day.
Brian: But with her, it’s the extra energy that she’s going to exert. Washing, conditioning, styling, brushing, combing. Long hair is more energy than she’s willing to spend. She would rather save that energy to have fun.
Lupe: My hair used to be mid-back, really curly. And I used to get it colored every couple of months. And I don’t know, over the years it’s just gotten really, really, really short. I mean, it’s not like a guy’s haircut. It has a style to it.
Lupe: But Brian’s right, I’ve always said I want to let it grow out. I used to love my hair long and then I see other girls with curly hair and they have beautiful hair. And I always say, I’m going to cut it, I’m going to cut it. But every two, three months I go get a haircut. And I guess I had never put two and two together. But I think instincts kick in and you do what you have to do to survive and adapt to your new norm. And I guess that’s what’s happening with me cause I never thought about it that way.
Brian: And it’s funny, to expand on this point. We were at a park today that has a lot of water, a lot of ponds and fountains. And there’s a lot of waterfowl this time of year, geese in particular. And people will take bread and crackers and stuff like that to feed the birds.
Brian: And this little girl had a piece of bread in her hand and this goose pretty much just came up. Now the goose’s head is about her height, that’s how small she was. But she got scared. She started crying, but instinctively she fell down, face down, covered her eyes and protected her body. All of her limbs tucked in underneath.
Brian: That was an instinctive reaction to protect her vital organs, her eyes and face. It’s funny to see instincts kick in because I’m sure nobody taught her to protect her face from a goose, but instincts kicked in.
Brian: And those are the same instincts that are telling Lupe, yeah, long hair, no don’t do it. Save your energy. The shorter hair is cooler. It is easier to keep and maintain and brush and comb and wash and condition, saving that energy for things she has to do or things she wants to do.
Lupe: If there’s anything that you’re doing instinctively or to save energy to help manage with fatigue, please let us know. Send us a message, comment in the post below and let us know.
Brian: And if you’re listening to this on a podcast player in the show notes, there will be a link to this post on SjogrenStrong.com, where you can leave a comment. And, or listen to this and find this post on Instagram, Facebook or Twitter and DM us or leave a comment there.
Brian: Real quick reminder, we are a few weeks away from the LA Walk for Sjogren’s. If you would like to sign up, please do. It’s a ceremonial walk, we’re not out banging miles. But it’s good to come out, hang out with likeminded individuals, dealing with the same thing you’re dealing with and get to know some of the people that are involved with managing the Sjogren’s Foundation. And just come out and have a day of fun.
Brian: Um, again, it’s a ceremonial walk and you can sign up. There will be a link below to register and or donate to Team Living Sjogren’s Strong. We are shy of our goal at this point and every dollar helps. And those dollars are going directly to the Sjogren’s Foundation. And you can help support Team Living Sjogren Strong. If you’d like to join us, you can also sign up to walk with Team Living Sjogren’s Strong. The more the merrier.
Brian: You’re going to commit to raising just $250 for the foundation. They give you a webpage you can share with your friends and get them behind you and supporting the Sjogren’s Foundation.
Lupe: And it’s a really fun experience. Like Brian mentioned, you get to meet other individuals living with Sjogren’s. You’ll get to meet Steve Taylor of the Sjogren’s Syndrome Foundation and you’ll get to meet others that live locally. So it’s a fun time. Join us if you can, and if you can’t, please donate.
Lupe: Until next time, sip constantly and stay hydrated.
Donate to the “Living Sjogren’s Strong” Team for the 2019 LA Area Walk for Sjogren’s.
You can join our Team and/or donate to the Sjogren’s Syndrome Foundation