When you have POTS - being upright is a challenge. We deal with fatigue, tachycardia, dizziness, fainting and more. Adapting to living life horizontally can make symptoms more manageable.
Just wanted to mention that there is also subtype of POTS that folks often misunderstand called Hyperadrenergic POTS. I like to tell folks to think of POTS as a spectrum instead associating it strictly with fainting and remaining horizontal. Many POTSies are like you, some are hyper-POTS, others flip-flop between hyper and hypo trying to find a balance.
Yes excellent point! They’re still trying to sort out if I may have that type or if my adrenaline surges are driven solely by mast cell - but I definitely swing in either direction. I get Brady AND tachy which is a challenge to navigate.
So generous of you Kelly, to share your experience and knowledge in this way, I imagine it must have cost you a few “spoons” to pull all this together!
Thank you for the shout out on my post about mobility aids too.
Thank you Jane! I really wanted all those hard lessons to be of benefit to others. There are days where I can’t write because my wrist hurts so much from the Sprain when I fainted (as an example) and I get so frustrated and resentful of the condition. Working on this at least helps me channel my mental energy into helping others.
My hope is your post will inspire others to adopt a mobility aid sooner!
Thanks so much for spending precious spoons writing this helpful advice. I wish I’d had it when I was first developing my severe dysautonomia!
I think that your advice about being in public would have helped me the most. It took me forever to figure out how to cope with standing in lines/queues, traveling (especially internationally), and dealing with syncope in public (passing out). I was just plain stubborn about resisting using all assistive devices- so I opposed shower chair and cane until I had no choice.
Like you, my MCAS limited my salty food options, and high potassium levels has complicated premade hydration choices. And I loathe the taste of salt, but I have learnt that my body rarely cares about my preferences.
Thank you again so much for sharing your experience and offering encouragement for ways to live life in ways that maximize its quality. And I send you 💜🥄💜🥄💜🥄
Thank you so much for the extra spoons - you have no idea how much I needed them! This one took a lot out of me - I underestimated the effect of reliving so many awful flares and bad injuries etc.
“My body rarely cares about my preferences” is so perfect for us - mine doesn’t care either!! I joke that I’m one step from being “cured “ (like meat - not like all better) lol
Great article and explanation of what POTS can do to level a person. One suggestion: we found a device to assist in putting on compression socks. There are a few out there, but this works well-- https://a.co/d/aeakqfA
Omg, these articles are SO helpful! I figured out several months ago that there's a name and a whole explanation to the shit I've been experiencing, and ever since then I've looked up stuff online and read stuff here and there but haven't been able to find anything even close to this. Which is what I've been looking for: someone who has POTS and can write about it in detail. Not only can you do that, but alllll the damn info and suggestions you have are fabulous. I'm not diagnosed but I know I've had POTS since I was a kid. And it hasn't gotten any better.
Also, I'm constantly craving salt. This has been going on for so long and nobody has told me it's related to POTS. They didn't even mention POTS.
I could easily write an entire novel about how seen I feel in these articles and how much value I find in them. I'm SO grateful. I have a Resources post that I update whenever I find stuff that can help other autistic people. Can I add you to the list as someone very knowledgeable in POTS and disability so other people can find your stuff?
I’d love to hear about temperature control tips! That’s a big subject for POTSies that wasn’t covered.
Re: mobility aids, it’s important to get as high of quality as you can afford/get covered by insurance. If you have wider hips, a bariatric (ugh) rollator might be a better option than the standard ones. It’s also important to get as padded a seat as possible if you anticipate sitting in your rollator/walker for long periods of time. I also read during my research phase that you want wheels at least 8” in diameter if you plan on going anywhere other than the smoothest surfaces.
If a rollator seems too heavy to push — mine is 15 lbs, so it’s not always practical — a cane with a seat is a great idea. There are the (imo) kind of ugly, basic ones with the seat unfolded and visible, but I recently found out about ones that fold up and look a lot more streamlined! Mine is a Ta-Da Chair from Amazon, which is marketed toward hikers. It’s really neat! I also recommend another trick I learned from someone on IG: there are wrist attachments for canes, but add a lanyard instead! You can keep your cane out of your way and even match the lanyard to your outfit if that’s your thing.
Thank you for sharing! These are such great tips to help people find what works for them with respect to mobility aids. It’s so important they be comfortable and manageable since you do have to push them or carry them.
Good point about temperature! It’s something I still struggle with - I’ve got lots of hacks but I definitely haven’t gotten it quite right yet.
Some people also asked for things like how it can connect to your hormones and how to tell what’s POTS versus other comorbids. So there me end up being a 4th article!
Your landlord might install those shower rails for you. I have come to believe that they are mandatory simply because they are in every rental I have rented in affordable housing or public housing, but maybe it’s just a government housing thing?
In the US, at least, they can be requested as a reasonable accommodation with a note from one’s doctor! However, I don’t think the author lives in the US. I’d just avoid letting a landlord try to get away with the suction cup ones — those are known to be dangerous!
Yeah that’s what my landlord offered and it didn’t feel safe for me. I could fight it but so many spoons and I have a rare rent controlled apartment so I try to be careful about picking my battles wisely.
I’m also no longer able to shower without assistance so I don’t really need the grab bars since I have a caregiver to help.
Great advice for other renters though - I think both Canada and the U.S. have a duty to accommodate.
I absolutely love your positive outlook and desire to share your knowledge and experiences with others. Sounds like you've been living with this condition a long time. Best wishes.
Thank you William - it’s been many years and far too many hard lessons. I hope that by sharing my tips and tricks other patients might have an easier journey.
"If you’re able (I can’t because I rent) have hand railings installed in your shower. Having something to grab onto when you feel faint is a big help" - actually, I'm not sure you can't even if you rent. There might be laws about ADA compliance. My landlord installed bars for me when I had my massive onset cascade in 2012. But I know every state and landlord is different, regardless of the law. Also, there are some the work by suction cups. That is, they are removable. Just be very sure they are firmly stuck in place.
Just wanted to mention that there is also subtype of POTS that folks often misunderstand called Hyperadrenergic POTS. I like to tell folks to think of POTS as a spectrum instead associating it strictly with fainting and remaining horizontal. Many POTSies are like you, some are hyper-POTS, others flip-flop between hyper and hypo trying to find a balance.
Yes excellent point! They’re still trying to sort out if I may have that type or if my adrenaline surges are driven solely by mast cell - but I definitely swing in either direction. I get Brady AND tachy which is a challenge to navigate.
So generous of you Kelly, to share your experience and knowledge in this way, I imagine it must have cost you a few “spoons” to pull all this together!
Thank you for the shout out on my post about mobility aids too.
Have a lovely weekend 💕
Thank you Jane! I really wanted all those hard lessons to be of benefit to others. There are days where I can’t write because my wrist hurts so much from the Sprain when I fainted (as an example) and I get so frustrated and resentful of the condition. Working on this at least helps me channel my mental energy into helping others.
My hope is your post will inspire others to adopt a mobility aid sooner!
Totally get the frustration of not being able to write due to what we’re dealing with sometimes!
Thanks so much for spending precious spoons writing this helpful advice. I wish I’d had it when I was first developing my severe dysautonomia!
I think that your advice about being in public would have helped me the most. It took me forever to figure out how to cope with standing in lines/queues, traveling (especially internationally), and dealing with syncope in public (passing out). I was just plain stubborn about resisting using all assistive devices- so I opposed shower chair and cane until I had no choice.
Like you, my MCAS limited my salty food options, and high potassium levels has complicated premade hydration choices. And I loathe the taste of salt, but I have learnt that my body rarely cares about my preferences.
Thank you again so much for sharing your experience and offering encouragement for ways to live life in ways that maximize its quality. And I send you 💜🥄💜🥄💜🥄
Thank you so much for the extra spoons - you have no idea how much I needed them! This one took a lot out of me - I underestimated the effect of reliving so many awful flares and bad injuries etc.
“My body rarely cares about my preferences” is so perfect for us - mine doesn’t care either!! I joke that I’m one step from being “cured “ (like meat - not like all better) lol
Great article and explanation of what POTS can do to level a person. One suggestion: we found a device to assist in putting on compression socks. There are a few out there, but this works well-- https://a.co/d/aeakqfA
Thank you for this - what an excellent suggestion!
Omg, these articles are SO helpful! I figured out several months ago that there's a name and a whole explanation to the shit I've been experiencing, and ever since then I've looked up stuff online and read stuff here and there but haven't been able to find anything even close to this. Which is what I've been looking for: someone who has POTS and can write about it in detail. Not only can you do that, but alllll the damn info and suggestions you have are fabulous. I'm not diagnosed but I know I've had POTS since I was a kid. And it hasn't gotten any better.
Also, I'm constantly craving salt. This has been going on for so long and nobody has told me it's related to POTS. They didn't even mention POTS.
I could easily write an entire novel about how seen I feel in these articles and how much value I find in them. I'm SO grateful. I have a Resources post that I update whenever I find stuff that can help other autistic people. Can I add you to the list as someone very knowledgeable in POTS and disability so other people can find your stuff?
Thank you, thank you, thank you ❤️
Thank you so much! I was actually really worried about the length of the article - so I appreciate you taking the time to tell me how helpful it was.
Absolutely you can include me - I’m always happy to be a resource to those who are dealing with this condition.
I’d love to hear about temperature control tips! That’s a big subject for POTSies that wasn’t covered.
Re: mobility aids, it’s important to get as high of quality as you can afford/get covered by insurance. If you have wider hips, a bariatric (ugh) rollator might be a better option than the standard ones. It’s also important to get as padded a seat as possible if you anticipate sitting in your rollator/walker for long periods of time. I also read during my research phase that you want wheels at least 8” in diameter if you plan on going anywhere other than the smoothest surfaces.
If a rollator seems too heavy to push — mine is 15 lbs, so it’s not always practical — a cane with a seat is a great idea. There are the (imo) kind of ugly, basic ones with the seat unfolded and visible, but I recently found out about ones that fold up and look a lot more streamlined! Mine is a Ta-Da Chair from Amazon, which is marketed toward hikers. It’s really neat! I also recommend another trick I learned from someone on IG: there are wrist attachments for canes, but add a lanyard instead! You can keep your cane out of your way and even match the lanyard to your outfit if that’s your thing.
Thank you for sharing! These are such great tips to help people find what works for them with respect to mobility aids. It’s so important they be comfortable and manageable since you do have to push them or carry them.
Good point about temperature! It’s something I still struggle with - I’ve got lots of hacks but I definitely haven’t gotten it quite right yet.
Some people also asked for things like how it can connect to your hormones and how to tell what’s POTS versus other comorbids. So there me end up being a 4th article!
Your landlord might install those shower rails for you. I have come to believe that they are mandatory simply because they are in every rental I have rented in affordable housing or public housing, but maybe it’s just a government housing thing?
In the US, at least, they can be requested as a reasonable accommodation with a note from one’s doctor! However, I don’t think the author lives in the US. I’d just avoid letting a landlord try to get away with the suction cup ones — those are known to be dangerous!
Excellent advice! I hardly weigh anything and I would be afraid to use those.
Yeah that’s what my landlord offered and it didn’t feel safe for me. I could fight it but so many spoons and I have a rare rent controlled apartment so I try to be careful about picking my battles wisely.
I’m also no longer able to shower without assistance so I don’t really need the grab bars since I have a caregiver to help.
Great advice for other renters though - I think both Canada and the U.S. have a duty to accommodate.
I absolutely love your positive outlook and desire to share your knowledge and experiences with others. Sounds like you've been living with this condition a long time. Best wishes.
Thank you William - it’s been many years and far too many hard lessons. I hope that by sharing my tips and tricks other patients might have an easier journey.
What a dreadful malady - Bob
Definitely not an easy one to cope with - but at least there are ways to lessen the symptoms!
"If you’re able (I can’t because I rent) have hand railings installed in your shower. Having something to grab onto when you feel faint is a big help" - actually, I'm not sure you can't even if you rent. There might be laws about ADA compliance. My landlord installed bars for me when I had my massive onset cascade in 2012. But I know every state and landlord is different, regardless of the law. Also, there are some the work by suction cups. That is, they are removable. Just be very sure they are firmly stuck in place.
And GREAT write up, again, Kelly! You hit it out of the park! (Not surprised, you are an excellent writer.)
Are you Lectin curious? Well, I think you have a gut feeling that you should be. Let me explain in my podcast here:
https://soberchristiangentlemanpodcast.substack.com/p/s2-ep-24-lectins-your-health-what-48b