Welcome to another episode of show “Sjogren’s Strong”.
This is Brian and I am solo today for the simple reason, Lupe’s has no idea I’m recording this episode and I’m sneaking it in on her.
But I wanted to have a conversation with you all in regards to supporting somebody with Sjogren’s syndrome. Lupe’s had a diagnosis for 10 years now, so I’ve got a little bit of experience and have learned over the last 10 years some tips and tricks and techniques that I wanted to share with you all in hopes that you would share with those that are supporting you with your Sjogren’s.
If they can take one thing away from this and help better support you, then I will have felt that this episode was worth it.
So first and foremost, Happy New Year.
Today is the third. If you’re listening to this on the day we drop it and, it’s going to be a great 2019.
We’ve got a lot of cool stuff planned personally, and for the show and for Sjogren’sStrong.com. We hope you bounce over there and take a peek at what we’re building out on the Internet and join us on Facebook, Instagram, Twitter, and join “Living Sjogren’s Strong, our Facebook group. Interact with us, let us know what you think, what you need and we will do our best to research and provide that for you.
A few things that I have come across in the last 10 years in supporting somebody with Sjogren’s strong is in my case, subtly reminding her about her Meds to ensure she’s taking her Meds when she’s supposed to. She doesn’t always and over time it can catch up to her and she can have a bad couple of days until she’s back on them. So I do my best to have those subtle reminders so as not to upset her sometimes she chooses not to. I think it’s okay.
It’s okay to take a break from prescribed Meds from time to time, obviously depending on the Med and in her case, you know, it is okay. However, you know, taking too long of a break that can catch up and has caught up with her in the past. So that’s step one, I keep my eye on the normal time she takes her Meds and if she’s in the kitchen, you know, just that subtle reminder, don’t forget your Meds. And sometimes she’ll be like, oh yeah, thanks. I appreciate it. And other times, you know, it’s the don’t tell me what to do. You’re not the boss of me. I’m sure everyone can relate.
The next thing is hydration. So in my vehicle I carry extra water, we are never without water and that’s one thing that’s come in handy from time to time. Ensuring we leave with full water bottles. Again, she likes ice cold, so ensure she’s leaving with one of her vessels filled with ice and water is a paramount and reminding her and or getting it together for her, so it’s ready when we’re ready to walk out the door can be a big help and water again, mixing it up, having different flavor profiles. Every once in a while I will buy a cucumber, and do cucumber infused water or add some fresh squeezed lemon to a half gallon jug of water that’s in the fridge just so it’s not constant water, water, water. A little bit of a different flavor can help with wanting to consume more, and again, mixing it up from time to time is a good idea.
Electrolytes, having packets of an additive that’s electrolyte is a good idea to have. So if we’re out and really active and it’s hot and or windy, we can just add a little bit of electrolyte to the water and that can help her with her hydration, which then in turn allows us to stay out and play a little longer. That has helped for us in the past.
And when I say electrolyte, anything from just simple sodium table salt, Gatorade Propel. If you hit a cycling shop, I guess that would be the best example. Uh, any large sporting goods store that has a cycle area in it, they tend to have great electrolytes because cyclists can, you know, ride for 100 miles a day and they are in desperate need of replacing electrolytes throughout a long distance ride like that.
So that’s a great place to find some electrolyte additives and energy blocks and things like that. But keeping that on hand can be a big help. And again, this is all just to make sure she’s feeling good, facilitate a longer day outside, having fun. These things have helped us in the past. So again, just sharing them with you.
Now this is one thing I don’t always do, but push to be active and I think I can push, and actually I really don’t need to push her. She loves the outdoors, so just suggesting, hey, let’s go do this. She’s usually in and on it, but if the person that you’re supporting with Sjogren’s isn’t, encourage to get outside. Even if it’s just for a walk, one lap around the block and then build upon that and build upon that to strengthen muscles and improve cardiovascular, it’s a good idea.
I caution you to learn the nonverbal communication that they’re going to be communicating with you such things as when they start to slow down, well, in my case, when Lupe starts to slow down, I know she’s struggling a little bit, so I encouraged to sip, I slow down. Maybe we find an easier path, an easier road. Maybe I make the decision to, well, let’s make a left because it can be a shorter route back home or back to the starting point. So those are things I’m looking out for.
Seeking shade, and this isn’t always just the shade of a tree or the shade of a building, but when she starts to adjust clothing, maybe roll sleeves down, changes from a ball cap to a boney style hat that’s full brim, that’s seeking shade as well. So when she starts seeking shade, I know she’s warming up and not feeling that great. So again, I can make a conscious decision of how the rest of the day is going to go. Whether we stop and take a break to rehydrate are not seeking shade is one of the big indicators with Lupe when we’re outside.
Requesting breaks, if she wants to take a break, which is rare, she’ll push through. But if she started to slow down, she seeking shade. Maybe I suggest we take a break and she says, you asked. So we find some shade, get her in it, get some fluids in her, you know, she starts to feel better and we can continue on and have a great day.
The biggest indicator that she gives off is when she starts to get quiet. So I encourage conversation when we’re out walking and hiking and cycling and things of that nature. And when she starts to get quiet and answers start to get shorter to the point of one word answers, I know she’s hurting. So therefore, again, I look for shade, I suggest a break. If she says yes, I know she’s hurting, so therefore we can make a decision together onto either cut the activity short, start making progress back towards the vehicle or what have you.
One of the biggest challenges I’ve had is changing up mike style of cooking. You know, you grow up learning to cook and or with a kind of a set diet and I’m learning to cook outside of that comfort zone with proteins and vegetables I normally don’t cook with spices for that matter, I normally don’t cook with.
These foods, with anti-inflammatory properties. Help her out in the long run as well. So me expanding my palate and learning to cook things I normally do not cook a is a great way to support Lupe with her Sjogren’s, so she’s getting a better meal, a healthier, more nutritious meal with spices and or products that have anti-inflammatory, which helped her tremendously. That’s something else you can do as well.
And the last thing I want to talk about, his chores.
The best example I was given by one of her doctors is, you know, how you feel when you have the flu. Your body aches, you’re tired, you just want to sit and rest in sleep. That is what somebody with Sjogren’s feels like most of the time.
So with that, having been said, chores around the house, you know, aren’t really equal. I do the majority of the cooking, I do the majority of the cleaning, one thing, she won’t let me touch his laundry for whatever reason. I don’t know. It’s not like I’ve ruined that many pieces of clothing, but um, she’s steadfast on being the only one to touch the washer and dryer.
It’s Kind of been a challenge for me as well because, you know, it’s a shared space. We should do it together. Let’s clean for a couple hours and you know, she’s just not feeling it, or she’s not feeling good enough to participate. Or if she does, it’s just going to crush her for the rest of the day and we’re not going to have fun. And I think that’s the biggest reason, Why I’ll step up and just do it, that way we can go have fun because I can cook and clean the kitchen up and get the dishes done and still go out and have ample amount of energy to have a great day. To wear, if she did, you know she wouldn’t. We would end up cutting the day short. So when it comes to household chores, whether it’s vacuuming, sweeping, mopping, cleaning, the kitchen, bathroom, etc. Just suck it up. Jump in there and get it done. Conserving her energy or his energy, If the person you’re supporting happens to be male and that way you can utilize that energy later on for fun.
In a nutshell, and to wrap this up reminding about Meds, hydration, carrying extra water, mixing the flavors up, carrying some electrolytes that can be added to water, encouraging to be active, but watching for signs and symptoms that they’re not feeling well. I.E. Seeking shade, slowing down, requesting breaks and getting kind of quiet and again, that’s the big indicator for me stepping up and learning to cook foods that are going to help with the symptoms of Sjogren’s. Anything with anti-inflammatory properties, uh, lots of protein and good forms of carbohydrates and fat, those are the things you’re going to need to learn to cook with if you normally don’t, and then again picking up and helping out with the chores around the house more and more, and that’s just to conserve that energy so you can have fun later on.
Again, I wish you all a happy new year and I look forward to interacting with more and more view online, whether it be Instagram, Facebook, or Twitter, or at SjogrenStrong.com.
I hope this episode gave you one takeaway and please share it with those that are supporting you. If you’re the one suffering with Sjogren’s and hopefully they can have one takeaway and help support you better.
And as Lupe says, “Sip constantly and stay hydrated”.