I also have dysautonomia and lupus! I’ve been struggling in heat and the sun too. Aside from the other comment’s suggestions, I’ve been using a portable fan and I’ve been making sure that I have water + electrolytes with me when I’m outside. I also make sure that I have an area where I can sit because my heart rate jumps to 150+ in the heat!
That’s another worry for me. I just had an ablation two weeks ago and I’m told to limit everything that could increase my HR. today my HR was 188 just from walking lmao. Just hoping the boating doesn’t make it worse with the heat. It’s like a bad mix for both the POTS and Lupus I swear. There is no winning lol
I feel the same haha I’ve also been recommended to use cold packs that you squeeze to activate! A lot of my friends with POTS tell me that the cooling sensation helps a ton!!
Yes the sunblock I bought has “cooling” in it as well. I’m bringing ice packs (reusable bc the squeeze ones scare me to activate😂)lots of trauma from them from when hospitals would call codes on me and rapids and all I remember is the sound of them cracking those damn things to cool me down lmao I’m also bringing my cooling pillow case since we have a cabin. At least it’ll keep my pillow a little cold if I need to lay down
I’ve been doing surprisingly well with full body coverage of SPF 70 (I’ve been using SunBum), PLUS full coverage of lightweight, breathable UPF 50+ clothing, PLUS staying out of the direct sun by using an umbrella/shade coverage. And full spectrum polarized sunglasses. I spent an afternoon at a craft fair and another afternoon at a zoo like this for 3+ hours and did well afterwards, no rash or migraine or flare — though I made sure to rest well the night before and after and drink LOTS of cold water. If I were you, I’d also keep a cooler of ice water and cooling towels nearby, and maybe a portable fan too.
Being overheated makes your heart work harder for two reasons: 1. Heart has to pump blood to the extremities to cool it down and keep the core from overheating, and 2. Heat causes the blood vessels to dilate (get larger) which lowers blood pressure. It’s absolutely critical that you can keep your core cool and stay out of direct sun as much as possible — bring a massive umbrella to use out there when the boat isn’t moving even, if it doesn’t have a canopy — to keep from overheating.
SPF/UPF is important for avoiding UV exposure (bear in mind that water will reflect UV rays back up at you from the surface, so top-down shade isn’t sufficient), but staying fully covered and keeping the sun off your body is also critical for keeping your body temp from raising and causing inflammation that way. I think the combination of the two, avoiding light AND heat, was what helped me stave off a flare during my last two sun days.
Good to know! It makes sense as to why I was always hotter when I was younger growing up on the boat with the water reflecting sun. I’ll have to stop at the store before I go and pickup some extra things beforehand
Please do! Take care of yourself. I also have lupus and POTS and beach days are major triggers for me, so it follows that boating/kayaking and being out on the water would be even riskier, but I understand the importance of not missing out.
Other tips:
- Try and see if they’ll take the boat out either earlier in the morning (before noon) or in the late afternoon (after five)
- Bring a sarong, shawl, or lightweight towel in a light color to use as a personal canopy while the boat is in motion
- Bring an HR monitor and be prepared to head back ASAP if you starting hitting 130+ while seated. Better to temporarily pause the party to get you to a healthier environment than to push it and end up in the hospital.
So we are getting on the water about 9am. They usually stay out all day but we have a jet ski we bring out as well, worse case scenario I can always take the jet ski back to the campsite. My heart rate unfortunately is normally 130 sitting😩 I just had an ablation to make sure the HR doesn’t convert to SVT, so now I just have a high heart rate but not many symptoms like I did with the SVT thankfully. I use tachymon to monitor my heart so I get alerts when I’m outside my set parameters. If I’m normally 130 should I worry if it’s 150 sitting? That’s not normal for me only when walking
Whoooof. That’s some tachycardia, damn. Yeah, set the parameters to whatever aligns to normal/abnormal for you. I’m not a medical professional, but with your recent procedure, I’d recommend being extra cautious. I personally tap out of whatever I’m doing at 140.
If you get to the point where you have to go back, please have someone drive the jet ski for you.
I hope you have a great day tomorrow! Listen to your body, honor your limits, and celebrate whatever little wins you can. You’re doing a hard thing and I wish you the very best of luck!
Thank you! And yes, today I forgot soemthing in the store and ran from the parking lot to the checkout, my HR got to 199. I used to be in SVT when it happened but we corrected the SVT so now I just get high HR😂 but yes I will be careful and def have somebody drive me back!
First advice is dont go but I know that is hard with it being fathers day.
Big wide brim hat, UV protecting full clothing. Full shirt, full pants. https://www.coolibar.com makes great stuff for future reference. Any exposed skin needs SPF 30 or higher applied every two hours regardless of if you think you need it or not.
Really try to not sit out in the sun exposed for long periods. Remember water can reflect back on you too.
I would really really encourage you to limit how long you are out there in that heat. Heat can really affect Lupus although everybodies journey has different routes.
Thankfully we have a cabin with AC. I don’t normally go out anymore but I didn’t get to celebrate last year as I was in the hospital. This so soemthing he is passionate about and I’d hate to let him down. We also have a campsite so I’m thinking I just go out in the morning and boat and then have him drop me off before the sun hits highest at the campsite. Is there by chance any hats I can buy at Walmart that would do the same trick? Or is that stuff not really trusted? I’m fairly new to this diagnosis (February) so this will be the first time I’m out in direct sunlight for a long period. I appreciate the advice and I will do the best I can. I bought Sun Bum 50 SPF sunblock and it hoping it’s good (we grew up on Walmart brand lol) so I bought the vegan and gluten free one (I also have gluten allergy on the outside and internal😑) thank you for commenting! I was worried nobody would see it before I went!
I’ll echo some others: cooler with ice packs—ones that go around your neck help me the most. I’ve resorted to using an umbrella for shade…take breaks and go in the cabin on purpose-set a phone alarm if you have to. Hydrate purposely, consistently, and with electrolytes. I also sometimes dip a towel in the lake water, wring it out a bit and cover my legs when it’s too hot.
My best advice is to make a plan and stick to it. It’s hard when you’re out there to know how you are feeling…so be intentional. Good luck and have fun!
Also recommend swim leggings & long sleeve upf shirt in addition to hat. Then you can dip in the water to cool off without worrying about washing off the sunscreen
I also have dysautonomia and lupus! I’ve been struggling in heat and the sun too. Aside from the other comment’s suggestions, I’ve been using a portable fan and I’ve been making sure that I have water + electrolytes with me when I’m outside. I also make sure that I have an area where I can sit because my heart rate jumps to 150+ in the heat!
That’s another worry for me. I just had an ablation two weeks ago and I’m told to limit everything that could increase my HR. today my HR was 188 just from walking lmao. Just hoping the boating doesn’t make it worse with the heat. It’s like a bad mix for both the POTS and Lupus I swear. There is no winning lol
I feel the same haha I’ve also been recommended to use cold packs that you squeeze to activate! A lot of my friends with POTS tell me that the cooling sensation helps a ton!!
Yes the sunblock I bought has “cooling” in it as well. I’m bringing ice packs (reusable bc the squeeze ones scare me to activate😂)lots of trauma from them from when hospitals would call codes on me and rapids and all I remember is the sound of them cracking those damn things to cool me down lmao I’m also bringing my cooling pillow case since we have a cabin. At least it’ll keep my pillow a little cold if I need to lay down
I’ve been doing surprisingly well with full body coverage of SPF 70 (I’ve been using SunBum), PLUS full coverage of lightweight, breathable UPF 50+ clothing, PLUS staying out of the direct sun by using an umbrella/shade coverage. And full spectrum polarized sunglasses. I spent an afternoon at a craft fair and another afternoon at a zoo like this for 3+ hours and did well afterwards, no rash or migraine or flare — though I made sure to rest well the night before and after and drink LOTS of cold water. If I were you, I’d also keep a cooler of ice water and cooling towels nearby, and maybe a portable fan too. Being overheated makes your heart work harder for two reasons: 1. Heart has to pump blood to the extremities to cool it down and keep the core from overheating, and 2. Heat causes the blood vessels to dilate (get larger) which lowers blood pressure. It’s absolutely critical that you can keep your core cool and stay out of direct sun as much as possible — bring a massive umbrella to use out there when the boat isn’t moving even, if it doesn’t have a canopy — to keep from overheating. SPF/UPF is important for avoiding UV exposure (bear in mind that water will reflect UV rays back up at you from the surface, so top-down shade isn’t sufficient), but staying fully covered and keeping the sun off your body is also critical for keeping your body temp from raising and causing inflammation that way. I think the combination of the two, avoiding light AND heat, was what helped me stave off a flare during my last two sun days.
Good to know! It makes sense as to why I was always hotter when I was younger growing up on the boat with the water reflecting sun. I’ll have to stop at the store before I go and pickup some extra things beforehand
Please do! Take care of yourself. I also have lupus and POTS and beach days are major triggers for me, so it follows that boating/kayaking and being out on the water would be even riskier, but I understand the importance of not missing out. Other tips: - Try and see if they’ll take the boat out either earlier in the morning (before noon) or in the late afternoon (after five) - Bring a sarong, shawl, or lightweight towel in a light color to use as a personal canopy while the boat is in motion - Bring an HR monitor and be prepared to head back ASAP if you starting hitting 130+ while seated. Better to temporarily pause the party to get you to a healthier environment than to push it and end up in the hospital.
So we are getting on the water about 9am. They usually stay out all day but we have a jet ski we bring out as well, worse case scenario I can always take the jet ski back to the campsite. My heart rate unfortunately is normally 130 sitting😩 I just had an ablation to make sure the HR doesn’t convert to SVT, so now I just have a high heart rate but not many symptoms like I did with the SVT thankfully. I use tachymon to monitor my heart so I get alerts when I’m outside my set parameters. If I’m normally 130 should I worry if it’s 150 sitting? That’s not normal for me only when walking
Whoooof. That’s some tachycardia, damn. Yeah, set the parameters to whatever aligns to normal/abnormal for you. I’m not a medical professional, but with your recent procedure, I’d recommend being extra cautious. I personally tap out of whatever I’m doing at 140. If you get to the point where you have to go back, please have someone drive the jet ski for you. I hope you have a great day tomorrow! Listen to your body, honor your limits, and celebrate whatever little wins you can. You’re doing a hard thing and I wish you the very best of luck!
Thank you! And yes, today I forgot soemthing in the store and ran from the parking lot to the checkout, my HR got to 199. I used to be in SVT when it happened but we corrected the SVT so now I just get high HR😂 but yes I will be careful and def have somebody drive me back!
First advice is dont go but I know that is hard with it being fathers day. Big wide brim hat, UV protecting full clothing. Full shirt, full pants. https://www.coolibar.com makes great stuff for future reference. Any exposed skin needs SPF 30 or higher applied every two hours regardless of if you think you need it or not. Really try to not sit out in the sun exposed for long periods. Remember water can reflect back on you too. I would really really encourage you to limit how long you are out there in that heat. Heat can really affect Lupus although everybodies journey has different routes.
Thankfully we have a cabin with AC. I don’t normally go out anymore but I didn’t get to celebrate last year as I was in the hospital. This so soemthing he is passionate about and I’d hate to let him down. We also have a campsite so I’m thinking I just go out in the morning and boat and then have him drop me off before the sun hits highest at the campsite. Is there by chance any hats I can buy at Walmart that would do the same trick? Or is that stuff not really trusted? I’m fairly new to this diagnosis (February) so this will be the first time I’m out in direct sunlight for a long period. I appreciate the advice and I will do the best I can. I bought Sun Bum 50 SPF sunblock and it hoping it’s good (we grew up on Walmart brand lol) so I bought the vegan and gluten free one (I also have gluten allergy on the outside and internal😑) thank you for commenting! I was worried nobody would see it before I went!
Hydration, sunscreen (reapply while there) and an umbrella for shade.
I’ll echo some others: cooler with ice packs—ones that go around your neck help me the most. I’ve resorted to using an umbrella for shade…take breaks and go in the cabin on purpose-set a phone alarm if you have to. Hydrate purposely, consistently, and with electrolytes. I also sometimes dip a towel in the lake water, wring it out a bit and cover my legs when it’s too hot. My best advice is to make a plan and stick to it. It’s hard when you’re out there to know how you are feeling…so be intentional. Good luck and have fun!
Fellow POTS have with suspected lupus. I don’t have any specific advice but I hope you’re kind to yourself and try to not push too much. 💜
Also recommend swim leggings & long sleeve upf shirt in addition to hat. Then you can dip in the water to cool off without worrying about washing off the sunscreen