*JOIN THE COMMUNITY: aimeeesther.podia.com/community If you are sick and tired of being sick and tired, come join our chronic illness community! Chronically We offers an online space and group coaching program tailored for those facing a wide range of chronic health challenges, helping you discover greater purpose, joy, and companionship in a life marked by persistent pain and uncomfortable symptoms. Whether you're dealing with conditions such as POTS syndrome, CFS/ME, fibromyalgia, diabetes, endometriosis, chronic migraine, asthma, chronic kidney disease, epilepsy, autoimmune diseases like lupus, Hashimoto's disease, celiac, rheumatoid arthritis, multiple sclerosis, Crohn's disease, or any other chronic health issue-this is the supportive community you've been searching for. Embrace a journey toward well-being with Chronically We.
Your hair always looks so beautiful and clean! If I tried to not wash my hair for longer than 2 days i would look like a swamp creature. My scalp and skin get oily fast. I think some of the strangest things to think about after my POTS got really bad is how I use to do things and how long it's been since I have done those things. I use to love going outside. I did always feel a little yucky in the sun after a while even before my POTS got bad but now I dread summer because I have to stay inside all the time. The heat is awful. I also haven't stood in my shower to take a shower in over 2 years. I wash my hair over the tub and sit down in my bath to wash myself after. I hear of people overcoming POTS and I wonder sometimes if I'll be able to someday. I really miss taking walks and being outside but I try to find things that make me happy that I can do inside and be thankful for that.
Omg! Your comment made me read it again! I have been doing the same things recently! I didn’t know why I haven’t been able to handle a total shower and hair wash (plus, I have to dye my roots every few weeks!). I long to just take a bath and shave my head! I don’t even know if I have this!
I can't stand without compression socks either. I can only nap if I have some other illness like a cold or the flu. I absolutely love my adjustable bed base, it is a total game changer.
My cardiologist actually recommended daily cardio as a treatment for pots. Its difficult to do while standing so I opt for sitting exercises, especially rowing/canoeing/kayaking. It is definitely a game changer
There's a whole exercise program for pots called the Levine Protocol. It starts out with cardio that you do lying down, like using a recumbent bike. I've never tried it, but I also do all my exercising seated or supine.
The only exercise I can do, but gently is swim. I used to be a swimmer in high school and a very good one. I don’t try to swim like I was back in high school. I use a float of any kind or kick board, and use them to support me as I kick or use my arms. I lay on a float and use my arms to go up and down the pool. I’m working my arm muscles by doing that. I find a variety of things to do that will help different muscle groups. I have a pool and that is Godsend. Last summer, it helped me a lot during the summer months. I cant wait to get back to it again. So get in the water, don’t expect you’re going to have to do a full swim work out. Start slow. It will help. I do know not all POTS patients have all the same symptoms. Post exertion fatigue, heat intolerance and taking showers are ones I struggle the most with. These symptoms began in Aug 2020 when my son had Covid. A month later, I developed these strange symptoms and it took 2 years of many visits to all sorts of doctors and tests to tell me I have Long Haul Covid and POTS. Good luck with yours and I can’t imagine being in your shoes with kids. I pray one day, a cure or good, reliable treatment will be available. In the meantime, with the knowledge out there, hopefully we all can live more comfortably. Thank you for your video.
You'll probably think this is nuts but I can do the bungee rebounder but can't easily go for a walk. My theory is that it the bouncing pushes the blood up and makes it tolerable.
I have hair past my waist and it takes most of my energy for the day to wash it (while on a shower chair). I definitely won’t cut it because that would really upset me, but also I don’t want it to get thick and with short hair you have to style it, I just put my hair in a braid. Since finding out I have POTS I bought Bombas compression socks and they help me a ton. I used to have major leg pain and now I hardly have any at all. For me going out in the sun in the summer is important because it helps my pain and energy. But I can’t tolerate any heat without getting dizzy and feeling like I’ve been drugged. Swimming when I have the energy at the lake is great for me because the water helps me cool down and energizes me a little, if I can swim I sit in a pool float.
I agree low carb is important, but for me low carb does not equate to carnivore only. I try to eat a lot of fruits and vegetables along with meats. I also eat beans and corn chips/tortillas, so as long as it's not gluten I'm ok.
My brother gave me some bike pedals that you can put next to a chair so you can pedal sitting down. They cost about $160 in the USA. He ordered them online. Those are helpful because I don't have to stand up to use them. They take up a lot less room in my apartment as well. I just did 5 minutes to start. I overdid it one day and paid for it the next. But if I don't do too much at once they work well. I can usually walk around the block but not far. The pedals are better than walking because I don't have to worry about getting dizzy.
Hey Aimee wondering about the travelling statement .. if you travel on busses or anything moving do you feel like you are moving for houts after ? Im full on homeless now was sleeping at bus shelter thought hey be good to get bus and get warm and sleep a bit .. and by fuck did i suffer also cos of the nap which i had anticipated to be longer as it was 5AM no traffic so was shorter each way i felt like i was moving for 11 hours after even sat in cafe/shop it done me very wrong .. not sure if its an Ehlers Danlos thing i recently like 2 weeks ago got diagnosed with Hypermobile Ehlers Danlos and getting reviewed again with my cardiologist thursday in regards to POTS ... as i have NEVER been this bad .. ever!! Being homeless with POTS whole other ball game .. was curious though if it was a POTS thing you went through maybe or maybe its an EDS thing 🤷♀️ ive had this since i was 5 but its so much worse as i have to walk over 12 hours a day and travel everywhere .. impossible to manage indeed .. Anyways thanks again Aimee for a great video! I was only talking bout the food thing with Carbs and eating and fainting ect today o.O trippy ha :) . Hope yer as well as ya can be girlie ! :)
I don’t like compression socks cuz I feel the soreness in my ankles more which is super annoying. I have heds and have weird probs with my ankles 🤦🏻♀️ I can’t stand in the shower anymore ugh
Do mobility aids help you? I love my power chair, it's helped me so much. My adjustable bed has been a game changer too. I start swimming PT this week!
I'm in way less pain when I limit my sleep. Sometimes I stay awake for two days, then sleep 12 hours the next day. When I wake up from that, the pain gets really bad around the 30 minute mark, but that's worth it because I have a whole day that's not as painfull.
New subscriber! Wow, you describe everything I experience so well. We miss out on so much of what life has to offer, so it's comforting to know there are others like us. Not many people understand the hiding out from the heat and not traveling. Keep smiling! 👍☺️
*JOIN THE COMMUNITY: aimeeesther.podia.com/community
If you are sick and tired of being sick and tired, come join our chronic illness community! Chronically We offers an online space and group coaching program tailored for those facing a wide range of chronic health challenges, helping you discover greater purpose, joy, and companionship in a life marked by persistent pain and uncomfortable symptoms. Whether you're dealing with conditions such as POTS syndrome, CFS/ME, fibromyalgia, diabetes, endometriosis, chronic migraine, asthma, chronic kidney disease, epilepsy, autoimmune diseases like lupus, Hashimoto's disease, celiac, rheumatoid arthritis, multiple sclerosis, Crohn's disease, or any other chronic health issue-this is the supportive community you've been searching for. Embrace a journey toward well-being with Chronically We.
Your hair always looks so beautiful and clean! If I tried to not wash my hair for longer than 2 days i would look like a swamp creature. My scalp and skin get oily fast. I think some of the strangest things to think about after my POTS got really bad is how I use to do things and how long it's been since I have done those things. I use to love going outside. I did always feel a little yucky in the sun after a while even before my POTS got bad but now I dread summer because I have to stay inside all the time. The heat is awful. I also haven't stood in my shower to take a shower in over 2 years. I wash my hair over the tub and sit down in my bath to wash myself after. I hear of people overcoming POTS and I wonder sometimes if I'll be able to someday. I really miss taking walks and being outside but I try to find things that make me happy that I can do inside and be thankful for that.
Omg! Your comment made me read it again! I have been doing the same things recently! I didn’t know why I haven’t been able to handle a total shower and hair wash (plus, I have to dye my roots every few weeks!). I long to just take a bath and shave my head! I don’t even know if I have this!
I can't stand without compression socks either. I can only nap if I have some other illness like a cold or the flu. I absolutely love my adjustable bed base, it is a total game changer.
I’ve heard they are great
My cardiologist actually recommended daily cardio as a treatment for pots. Its difficult to do while standing so I opt for sitting exercises, especially rowing/canoeing/kayaking. It is definitely a game changer
There's a whole exercise program for pots called the Levine Protocol. It starts out with cardio that you do lying down, like using a recumbent bike. I've never tried it, but I also do all my exercising seated or supine.
Love the tee! With you on naps…they wreck me too!
I let the carbs go. I am so happy to hear you finally tried carnivore. It is absolutely life changing. So glad you tried it.
I used to LOVE walking and running, but now my symptoms are so bad that I can barely walk around the grocery store without feeling sick and faint.
The only exercise I can do, but gently is swim. I used to be a swimmer in high school and a very good one. I don’t try to swim like I was back in high school. I use a float of any kind or kick board, and use them to support me as I kick or use my arms. I lay on a float and use my arms to go up and down the pool. I’m working my arm muscles by doing that. I find a variety of things to do that will help different muscle groups. I have a pool and that is Godsend. Last summer, it helped me a lot during the summer months. I cant wait to get back to it again. So get in the water, don’t expect you’re going to have to do a full swim work out. Start slow. It will help. I do know not all POTS patients have all the same symptoms. Post exertion fatigue, heat intolerance and taking showers are ones I struggle the most with. These symptoms began in Aug 2020 when my son had Covid. A month later, I developed these strange symptoms and it took 2 years of many visits to all sorts of doctors and tests to tell me I have Long Haul Covid and POTS. Good luck with yours and I can’t imagine being in your shoes with kids. I pray one day, a cure or good, reliable treatment will be available. In the meantime, with the knowledge out there, hopefully we all can live more comfortably. Thank you for your video.
I’m a shower sitter as well!!
You'll probably think this is nuts but I can do the bungee rebounder but can't easily go for a walk. My theory is that it the bouncing pushes the blood up and makes it tolerable.
I do the same thing with my hair. I leave it long and wash it about once a week. Short hair is too much work.
I have hair past my waist and it takes most of my energy for the day to wash it (while on a shower chair). I definitely won’t cut it because that would really upset me, but also I don’t want it to get thick and with short hair you have to style it, I just put my hair in a braid.
Since finding out I have POTS I bought Bombas compression socks and they help me a ton. I used to have major leg pain and now I hardly have any at all.
For me going out in the sun in the summer is important because it helps my pain and energy. But I can’t tolerate any heat without getting dizzy and feeling like I’ve been drugged.
Swimming when I have the energy at the lake is great for me because the water helps me cool down and energizes me a little, if I can swim I sit in a pool float.
I’ve been using MM protocols for POTS and it seems to make a difference.
I agree low carb is important, but for me low carb does not equate to carnivore only. I try to eat a lot of fruits and vegetables along with meats. I also eat beans and corn chips/tortillas, so as long as it's not gluten I'm ok.
Your hair looks good. Women should have long hair.
Women should have whatever hair they want. Same thing for men.
My brother gave me some bike pedals that you can put next to a chair so you can pedal sitting down. They cost about $160 in the USA. He ordered them online.
Those are helpful because I don't have to stand up to use them. They take up a lot less room in my apartment as well.
I just did 5 minutes to start.
I overdid it one day and paid for it the next. But if I don't do too much at once they work well. I can usually walk around the block but not far. The pedals are better than walking because I don't have to worry about getting dizzy.
Hey Aimee wondering about the travelling statement .. if you travel on busses or anything moving do you feel like you are moving for houts after ?
Im full on homeless now was sleeping at bus shelter thought hey be good to get bus and get warm and sleep a bit .. and by fuck did i suffer also cos of the nap which i had anticipated to be longer as it was 5AM no traffic so was shorter each way i felt like i was moving for 11 hours after even sat in cafe/shop it done me very wrong .. not sure if its an Ehlers Danlos thing i recently like 2 weeks ago got diagnosed with Hypermobile Ehlers Danlos and getting reviewed again with my cardiologist thursday in regards to POTS ... as i have NEVER been this bad .. ever!! Being homeless with POTS whole other ball game .. was curious though if it was a POTS thing you went through maybe or maybe its an EDS thing 🤷♀️ ive had this since i was 5 but its so much worse as i have to walk over 12 hours a day and travel everywhere .. impossible to manage indeed ..
Anyways thanks again Aimee for a great video! I was only talking bout the food thing with Carbs and eating and fainting ect today o.O trippy ha :) .
Hope yer as well as ya can be girlie ! :)
Thanks for the video ! Keep em coming !! :)
I am sorry that you are homeless with Ehlers Danlos. That sounds extra horrible.
So you have fibromyalgia and pots syndrome ? Praying God's healing for you
Can I get a link of your compression socks, please?
I don’t like compression socks cuz I feel the soreness in my ankles more which is super annoying. I have heds and have weird probs with my ankles 🤦🏻♀️ I can’t stand in the shower anymore ugh
Aimee, do you also have swelling in your legs and feet because of POTS if you don't wear your compression socks while standing or walking?
Do mobility aids help you? I love my power chair, it's helped me so much. My adjustable bed has been a game changer too. I start swimming PT this week!
I'm in way less pain when I limit my sleep. Sometimes I stay awake for two days, then sleep 12 hours the next day. When I wake up from that, the pain gets really bad around the 30 minute mark, but that's worth it because I have a whole day that's not as painfull.
That’s interesting ❤
@@Christinesobsevations It's kinda strange, but that's what happens.
New subscriber! Wow, you describe everything I experience so well. We miss out on so much of what life has to offer, so it's comforting to know there are others like us. Not many people understand the hiding out from the heat and not traveling. Keep smiling! 👍☺️
Thank you very much for the video! I was wondering if you have ever tried LDN or researched Candida overgrowth?
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