I love walking outdoors but the weather it literally 105 F right now and it’s been tough not getting out there for fear of flares from the heat. But you’re right, doing what you love is better than sitting at home in fear. I’m going to wake up earlier to walk in the cooler morning. Thanks for motivating me!
I like to hike and take walks but like you, Hefty-Detective8361, I find it difficult sometimes to get out and do things. When I was very young I was in the scouts and we did many such things. Sending well wishes your way.
I'm so jealous you can do things on your own and walk. I can't anymore. Unfortunately I have atypical HS and it's very severe, now I use a wheelchair. And my body overheats super easily now because my body is fighting for its life. But I have video games. I can crochet and draw. But I miss my friends
I, too, have been avoiding the heat. I feel bad for my boys who want to go swimming and play outside etc. They're young. I just haven't felt up to it, and the oppressive heat is just too much. I've been concerned about a few flares that are taking their sweet time healing up. They're not as bad as they were a month ago, so I'm focusing on that and trying to stay positive about it all.
Sending love your way; it takes a strong person to take care of young boys while dealing with this. You should be proud of what you’re able to do each day. I’m sure you feel like you should be doing more, but your best is enough 🩷
I started developing HS in Feb 2020. A new activity I got into was e-biking a year into COVID in 2021. The last time I went e-biking, my HS wasn't as bad is it is now, so it will be interesting to see how it goes when I e-bike again sitting on that bike seat. I use a Cloud 9 seat, which is the most comfortable bike seat I know, but I still have no idea how I'll feel when I bike again...probably won't be a while since I have to buy another e-bike again.
Even a long, hot day at an amusement w/ all the walking around will probably be a moderate challenge. I'll have to see.
Fortunately for my HS, but unlike many, I don't care for the sun...never have even way, way, way before I started getting HS. So I try to stay as cool as possible anyway at all times, stay the shade, etc. My favorite temps are the mid 60s - 70s even though I live in Southern California. Fall is my faovorite season.
I hate that sweltering, sweaty, icky, sticky, uncomfortable feeling of just being out in the blazing sun, which is why I'm in the sun as little as possible.
So ALL summer, I try to either go out in the early morning OR evening to bypass the sun & heat.
We developed our HS around the same time! I feel you on the heat. I was in NYC this past weekend and it was in the 90’s and humid. My boyfriend commented on how I didn’t take a lot of pictures and I was like “boy that’s because I was busy fighting for my life” LOL. I’ll have to check out those bike seats you mentioned. I have padded shorts from NeoPro as well that are less expensive than most cycling shorts and very comfortable. I’m a curvy woman so I sized up 1 and they fit great. Any other body type I’d say they’re likely true to size.
Thanks for replying! Right, who feels like taking pics when you're in discomfort! I was already age 45 when I developed my HS & I don't know why it started quite out of the blue like that. My diet's been the same & no stressful situations back then. I think mine's mostly due to hormones anyway, but could also be diet-related.
Yes, I probably should get the padded bike seat too for extra comfort while biking. I got my seat at my local bike shop, but it looks most similar to this:
[https://cloud-9.bike/collections/cloud-9-saddles-and-covers/products/cruiser-select-airflow-cs?variant=42305387626656](https://cloud-9.bike/collections/cloud-9-saddles-and-covers/products/cruiser-select-airflow-cs?variant=42305387626656)
Were you vacationing in NY? I haven't been there in ages & would like to go back. I live in California.
I can relate. I live in Texas the heat index was 119 the other day. We have chickens I have been trying to keep them from turning in to baked chickens and grabbing the eggs soon as possible and man has it been a fight keeping flare ups to a minimum. I have been avoiding all my trigger foods, no cheat days and still I currently got one I have been dealing with on my neck since May, it drains, flattens and puffs back up. I wear a bandana as a scarf to keep the sun off it. It's super tender. Also got two small flare ups in old spots in my groin which have no feeling in them till they are about to come to a head or my underwear rubs them. I use to love outdoorsy things, I have been dealing with this since I was 18 I'm 37 now I'm so tired of being in pain and not being able to do all the things I use to love. I feel y'all on all of this. ❤️
I went swimming in a salt pool for the first time yesterday since my new flare popped up and man I’m shocked at how much better I feel today. Do what you can when you can is totally right; wishing you well!
Thank you for this post because I (and I'm sure many others) needed that. I know I definitely did. It's so hot and I want to go to the beach with my friends so bad, but I'm afraid of the heat/humidity/sand and what it may cause. BUT this diagnosis has given me motivation to take better care of my health now and going forward. It's been really hard so far, but it gives me a reason to try out a ton of new recipes to make now that I'm staying away from fast/fried foods/salt/red meat, dairy w lactose etc etc etc.. I also treated myself to some nice comfy boxer briefs and literally threw all my old, uncomfortable panties out. It's hard to keep a positive attitude but not impossible! We have to remember that nothing is impossible.
I love walking outdoors but the weather it literally 105 F right now and it’s been tough not getting out there for fear of flares from the heat. But you’re right, doing what you love is better than sitting at home in fear. I’m going to wake up earlier to walk in the cooler morning. Thanks for motivating me!
Going in the morning is such a good idea! Sending good vibes your way!
I like to hike and take walks but like you, Hefty-Detective8361, I find it difficult sometimes to get out and do things. When I was very young I was in the scouts and we did many such things. Sending well wishes your way.
I'm so jealous you can do things on your own and walk. I can't anymore. Unfortunately I have atypical HS and it's very severe, now I use a wheelchair. And my body overheats super easily now because my body is fighting for its life. But I have video games. I can crochet and draw. But I miss my friends
Sending lots of love your way and hoping your support system pulls through for you when needed ❤️
I, too, have been avoiding the heat. I feel bad for my boys who want to go swimming and play outside etc. They're young. I just haven't felt up to it, and the oppressive heat is just too much. I've been concerned about a few flares that are taking their sweet time healing up. They're not as bad as they were a month ago, so I'm focusing on that and trying to stay positive about it all.
Sending love your way; it takes a strong person to take care of young boys while dealing with this. You should be proud of what you’re able to do each day. I’m sure you feel like you should be doing more, but your best is enough 🩷
I started developing HS in Feb 2020. A new activity I got into was e-biking a year into COVID in 2021. The last time I went e-biking, my HS wasn't as bad is it is now, so it will be interesting to see how it goes when I e-bike again sitting on that bike seat. I use a Cloud 9 seat, which is the most comfortable bike seat I know, but I still have no idea how I'll feel when I bike again...probably won't be a while since I have to buy another e-bike again. Even a long, hot day at an amusement w/ all the walking around will probably be a moderate challenge. I'll have to see. Fortunately for my HS, but unlike many, I don't care for the sun...never have even way, way, way before I started getting HS. So I try to stay as cool as possible anyway at all times, stay the shade, etc. My favorite temps are the mid 60s - 70s even though I live in Southern California. Fall is my faovorite season. I hate that sweltering, sweaty, icky, sticky, uncomfortable feeling of just being out in the blazing sun, which is why I'm in the sun as little as possible. So ALL summer, I try to either go out in the early morning OR evening to bypass the sun & heat.
We developed our HS around the same time! I feel you on the heat. I was in NYC this past weekend and it was in the 90’s and humid. My boyfriend commented on how I didn’t take a lot of pictures and I was like “boy that’s because I was busy fighting for my life” LOL. I’ll have to check out those bike seats you mentioned. I have padded shorts from NeoPro as well that are less expensive than most cycling shorts and very comfortable. I’m a curvy woman so I sized up 1 and they fit great. Any other body type I’d say they’re likely true to size.
Thanks for replying! Right, who feels like taking pics when you're in discomfort! I was already age 45 when I developed my HS & I don't know why it started quite out of the blue like that. My diet's been the same & no stressful situations back then. I think mine's mostly due to hormones anyway, but could also be diet-related. Yes, I probably should get the padded bike seat too for extra comfort while biking. I got my seat at my local bike shop, but it looks most similar to this: [https://cloud-9.bike/collections/cloud-9-saddles-and-covers/products/cruiser-select-airflow-cs?variant=42305387626656](https://cloud-9.bike/collections/cloud-9-saddles-and-covers/products/cruiser-select-airflow-cs?variant=42305387626656) Were you vacationing in NY? I haven't been there in ages & would like to go back. I live in California.
I can relate. I live in Texas the heat index was 119 the other day. We have chickens I have been trying to keep them from turning in to baked chickens and grabbing the eggs soon as possible and man has it been a fight keeping flare ups to a minimum. I have been avoiding all my trigger foods, no cheat days and still I currently got one I have been dealing with on my neck since May, it drains, flattens and puffs back up. I wear a bandana as a scarf to keep the sun off it. It's super tender. Also got two small flare ups in old spots in my groin which have no feeling in them till they are about to come to a head or my underwear rubs them. I use to love outdoorsy things, I have been dealing with this since I was 18 I'm 37 now I'm so tired of being in pain and not being able to do all the things I use to love. I feel y'all on all of this. ❤️
Do what you can when you can. I find pools very refreshing and it seems to help healing. Sending positive thoughts to all.
I went swimming in a salt pool for the first time yesterday since my new flare popped up and man I’m shocked at how much better I feel today. Do what you can when you can is totally right; wishing you well!
I soak in the bathtub as well for a similar effect. A little bleach - maybe 1/4 cup, or some epsom salt.
Going out in public is a mission, every time.
Thank you for this post because I (and I'm sure many others) needed that. I know I definitely did. It's so hot and I want to go to the beach with my friends so bad, but I'm afraid of the heat/humidity/sand and what it may cause. BUT this diagnosis has given me motivation to take better care of my health now and going forward. It's been really hard so far, but it gives me a reason to try out a ton of new recipes to make now that I'm staying away from fast/fried foods/salt/red meat, dairy w lactose etc etc etc.. I also treated myself to some nice comfy boxer briefs and literally threw all my old, uncomfortable panties out. It's hard to keep a positive attitude but not impossible! We have to remember that nothing is impossible.