Sjogren's Strong

Introduction

Working, Sjogren’s and Fatigue

Lupe has been hitting it hard, Work, School, and hitting the wall. Listen to what she has been doing to help fight the fatigue associated with Sjogren’s.

Working, Sjogren’s and Fatigue

Lupe & Brian:     Welcome to another episode Sjogren’s Strong.

Lupe:     This is the Lupe.

Brian:    And this is Brian. And today we want to discuss fatigue.

Brian:    So, we came across an article in the New York Times and there were two women that were discussing fatigue. They both worked full time and one of them stated how she takes half of one of her weekend days to rest and recover from the work week. And how her life has changed and her children, young children have had to come to an understanding that mom needs time to rest.

Brian:    The second lady, seem to work in fashion or something along those lines. And commuted on a train and discussed how she would take the train to Albany, New York and it was the last stop, fortunately. One time she fell asleep on the train because she was so tired and it was 20 minutes after the train arrived to where a conductor woke her up. And she felt the embarrassment of that and was in a lot of pain and had a hard time getting her faculties about her and being able to get up and get off the train.

Brian:    So, with Lupe pushing herself as hard as she has been, pushing herself, the last eight weeks, we kind of wanted to talk about fatigue, Because there’s been a change in our lifestyles, uh, the last eight weeks. Fortunately we only have six weeks left.

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Lupe:     Yeah, that’s right.

Brian:    Six weeks left for this semester. I hope she continues and she seems to be having a lot of fun.

Lupe:     I am. I love it.

Brian:    She seems to be having a lot of fun with it, but things have changed.

Lupe:     Well, okay. So I’ve been in school two months. I work approximately 45 hours a week and I’m in school two nights a week, so for a total of eight hours. And then on top of that I have about, I don’t know, about 8 to 10 hours of homework to do a week. And of course that has affected our weekends. You know, we’re not as active, we’re not hiking as much or just playing because A, I need to do homework assignments and B, I feel like I need rest.

Lupe:     So, I’ve kind of been sleeping in during the week. I usually get up between 4:45 and 5:00 to get ready for work. I go in at 6:30. Um, on the weekends, I would usually, I don’t know, get up, wake up like at five o’clock and I would tell Brian, come on, let’s go, we got to go hiking. Where’s our next adventure? And I haven’t been doing that. I’ve actually been sleeping till 8am, sometimes 9am, which I don’t really like doing because I feel like the day gets away from me. But, uh, my body needs it. So I’m listening to my body and I am resting and, yeah.

Brian:    During the week, what kinds of things are you doing to help combat the fatigue?

Lupe:     I’m really fortunate that I sit behind a desk nine hours a day. Uh, I’m a project manager for a packaging company and we have SAP. If you’re familiar with it, everything is at your fingertips. So I don’t need to go to different departments or to the plant to get the information that I need. I just go into the system and it tells me what I need to know, so I’m fortunate.

Lupe:     But what I do these last couple of months, if I feel that I’m getting tired, I actually, I get two breaks and an hour for lunch. During my 15 minute break, I will go to my car and I’ll take a little power nap. And I set my alarm because I want to be sure to wake up. Although, when you know you have to get up, you’re kind of in between, you’re not fully asleep, but you’re not fully awake. You’re kind of conscious so you know what’s going on. But, so I know I have to get up, but I set my alarm anyways.

Lupe:     And then during my hour lunch, if I feel I have the energy, because as you know, I like walking. If I feel I have the energy to walk or if I need a little pick me up, I work about a quarter mile from a little shopping center. I’ll go to Starbucks and I’ll buy myself a Vanilla Chai Latte, which is what I love. And I keep telling him, Brian that, that doesn’t have any caffeine. And he tells me that it does .

Brian:    Not all teas are caffeine free. I’m not sure if the type of tea they use doesn’t have caffeine, but when you’re craving it as much as you do, I bet it’s got caffeine in it.

Lupe:     Well, it is a caffeine or crack because I do find myself craving it and I swear that they put something in it. And you know, I try to ween myself off of it. But for these couple of months it’s kind of been helping me out. And I try to stay away from it because they’re over $5, which is a little pricey, I think. But if I need an excuse to walk, like sometimes I get a little bit lazy and I don’t want to walk. And that’s my excuse. You want a Starbucks, you got to earn it. So I will walk to Starbucks. I’ll get my coffee or Vanilla Chai Latte and I will walk back. So I earned it.

Brian:    So, in between work and school, you’ve got a little bit of downtime. For those of you who don’t know, we live in southern California, so if it’s 20 minutes away, you need a good hour to get there. So she goes straight from work to school and most likely has a good amount of time in between. Are doing anything before school starts to help offset the fatigue?

Lupe:     Actually, yes, because I do have about 45 minutes to an hour from the time that I get to school. If I feel, again, if I feel that I’m tired, I’m fatigued, my body needs rest, I will nap a little bit. I try to study when I can, but sometimes you’re just fatigued and nothing sticking, right. So, I take a little power nap, 15-20 minutes, anything helps. Or if I feel up to it, I like to walk around the campus for about 20 minutes and that gets my energy going. And I know a lot of people think like, how can walking give you energy? But it does. And I can’t explain it. I’ll let Brian do that. But it just, it helped a little bit with the energy levels.

Brian:    Well, you’re just getting a blood flow and circulation system cruising. Your muscles pumped up. So, no, it’ll help wake you up for sure.

Lupe:     Yeah, it really does. Of course, if I just feel like I have zero energy and I’m running on negative spoons, I’ll just sit in my car. But when I actually get to class, I wake up. You know, I’m paying attention. Everything that they’re talking about, I’m getting it. It’s sinking in. I’m absorbing everything that they’re talking about, I’m absorbing because I’m really interested. So it doesn’t affect my school at all.

Brian:    Yeah, it’s pretty weird because usually I’m the first one up in the last one to go to bed. However, lately, sometimes I’ve been falling asleep and she’s still up doing homework and studding, which is cool.

Lupe:     But you know what, um, with this time change, last week, it’s kind of messed me up a little bit more. So my body has to adjust to the time change because what did we do, we sprung forward, right? So we lost an hour sleep. Your body doesn’t get tired. Say if I usually fell asleep at 10 my bite doesn’t get tired till 11, so you know, you lose an hour regardless.

Brian:    And your diet, actually, I think you’ve been better with your diet since you started school. I think the first week of school you had a difficult time, but you seem to be back on your normal diet. That seems to have helped with the energy level.

Lupe:     Well, I know I’ve said it a million times, but I believe that diet is very important to your energy levels. Junk in, junk out. If you put stuff that doesn’t belong in your body, you’re not going to have energy. Your brain is going to be foggy. You’re not going to want to do anything because you’re not eating anything that nourishes your body. So, yes, it’s important.

Lupe:     And a lot of times I’ve fallen off my diet, I’m human and I pay for it. And I don’t like the way that I feel. That’s why I try to stay away from Starbucks. But lately, you know, if it helps me, if it helps keep me awake and a little bit with my energy levels. Although, if I eat too much sugar, it goes straight to my head and then I crash, about half an hour, 45 minutes later I crash hard. So that’s why I really, I’d rather not. It’s more of a craving I think. I mean I’ll drink a cold drink, ice cold water, ice cold Gatorade. That kind of keeps me awake. So it’s really cold at work. They keep fit about 65 degrees. So that kind of keeps me moving.

Brian:    So, we wanted to share these challenges. Uh, that Lupe has been going through the last few weeks, with you all. And ask you, if you’re working part time or full time, let us know what type of work you do. Is it labor intensive or is it more office type work? And not that office type work isn’t tiring, but let us know what type of work you do and what you do, what helps you stay awake or what helps you combat the fatigue. Share with us and share with the community. And we will talk about those on an upcoming episode, but we would love to hear from you and let us know what you’re doing.

Lupe:     You know, also what I do is, because when you sit down for too long, as you all know, you kind of get really stiff. And my chair at work is very comfortable, but sitting too long, I get stiff. I have at my desk, uh, some pictures of how to stretch your back, your legs, just how to stretch your body. And also, I get up and, and I kind of walk around the office a little bit, kind of stretching. People look at me like, what are you doing,, you know? I’m whoop, whoop. But um, you know, that helps a little bit too.

Lupe:     I guess it depends on your situation, what kind of job it is that you do. You know, again, I’m fortunate that I sit behind a desk, but a lot of people do manual labor, you know. They have to be on their feet. They have to, I don’t know, build things.

Brian:    So, yeah, please share with us. Let us know what you do to help combat fatigue. And let us know how severe your fatigue is. I believe we’re in a pretty fortunate situation to where on a few occasions, during a pretty good flare, she’s been immobile where she needs to lay down, she needs to sleep. She’s not going to get up to do anything but use the restroom. And that’s when my care giver skills kick in. And I attend to her a little more and bring her water and make sure she’s got Gatorade. And I brought her, her meds because she’s like, I’m too tired. I think she’s just playing me.

Lupe:     Never. I would never intentionally play you. Don’t tell him.

Brian:    But uh, you know, that has happened. But fortunately it’s not a weekly thing. It’s not even a monthly thing for Lupe.

Lupe:     A few weeks ago, when I did push myself, you know, the hike and the bike ride, I seriously couldn’t move and Brian really stepped up and he brought me my meds and he would bring me my food. And it’s kind of rare for me. I hadn’t flared since September last year. And just a couple of weeks ago, it hit me hard. But again, if I stay on my diet, I think a diet for me is key, it’s 100%. If I get off my diet, I feel it instantly. So, that’s why I try to eat as healthy as I can and I’m human and I go back to my old ways, but then I start feeling bad again. So that’s why diet is important to me.

Brian:    So, that’s going to wrap it up for this week’s episode of Sjogren’s Strong. Again, we’d love to hear from you. What type of work do you do? How severe is your fatigue? And what do you do to help cope with this fatigue throughout the work week?

Lupe:     I enjoy interacting with everyone on social media and really appreciate those of you who are so giving with your advice and encouragement. I’m learning as much from you as I hope you are learning from me.

Lupe:     Until next time, sip constantly and stay hydrated.

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