#pot syndrome

[ididit-allofit-foryou]

Chronic Illness Products: Tried and Tested by a Fellow Spoonie

Hey! I’m Rain, and I have various chronic illnesses and disabilities, including: POTS, chronic migraine, chronic pain, and chronic fatigue. The following products are some that have helped me with my symptoms!

Migraine Ice Head Wrap

https://www.amazon.com/dp/B09BN7TV6N/?coliid=I2CB88I8424KRB&colid=OPCCR26R0SR4&psc=1&ref_=list_c_wl_lv_ov_lig_dp_it

This is great because it can be either heated in the microwave or cooled in the freezer. It has gel in it and it is heavy so it puts a little pressure on your head. It also has velcro closure so it can be adjusted for head size and pressure. You don’t even have to put it in the freezer if you like it cold, because if you keep it at room temperature (my house is usually between 68-71 degrees F) it will get cold by itself and it can help for a while, about 10 minutes before it gets warmed by your body heat.

Monthly Pill Organizer

https://www.amazon.com/dp/B09V53JTM6/?coliid=I2IBUBXDTRNU36&colid=OPCCR26R0SR4&psc=1&ref_=list_c_wl_lv_ov_lig_dp_it

I hated having to refill my pill box every week, so I got 2 monthly organizers and use one for morning and one for night, and I only have to fill it once a month! I like this band because it is easy to open and each week comes out by itself so if you travel you can take just one week with you. I also like that they are all in a case and it closes for safe keeping.

Bed Tent

https://www.amazon.com/dp/B07T4JV6ZT/?coliid=I33UE149JTQBTG&colid=OPCCR26R0SR4&psc=1&ref_=list_c_wl_lv_ov_lig_dp_it

This is more expensive, but it is absolutely worth it if you have migraines. It has 6 zippers: one on each side, one on each end, and the top part of each end flap has a second zipper that opens a mesh area if you want air or light. You can close it entirely, and it makes it dark even in daylight, but it is still breathable and not stifling. There is also a pocket at one end that can hold a TON of stuff. I keep snacks and things in there for easy access. Finally, there is a little circle hook on the top where you can hang a camping fan or light if you want!

Cooling Neck and Head Towel

https://www.amazon.com/dp/B00JH4H5AS/?coliid=I3L6Z4MFFV2IK1&colid=OPCCR26R0SR4&psc=1&ref_=list_c_wl_lv_ov_lig_dp_it

There’s a few different brands of these, and I couldn’t find the exact one I have, but any will work! My brother used this brand for when he played sports–I use mine to cool my neck when I’m nauseous lol. It stays cold for longer than just a regular rag and the water doesn't get everywhere.

Neck Pillow

https://www.amazon.com/dp/B09MQ416CR/?coliid=I34LO7QKQ5H4Z&colid=OPCCR26R0SR4&psc=1&ref_=list_c_wl_lv_ov_lig_dp_it

Simple, yet effective. If you have POTS or any other condition that makes it hard to sit up for long periods of time, or a condition where you have neck weakness/pain, then this is for you. Riding in a car? Recline that seat a bit and put on a neck pillow. 10/10 much better car experience.

Cane With Seat

https://www.amazon.com/dp/B00DPOOCC0/?coliid=I133WRLIWPH40D&colid=OPCCR26R0SR4&psc=1&ref_=list_c_wl_lv_ov_lig_dp_it

I have POTS, and I use a wheelchair for most places that require walking, but a lot of areas where I live are not wheelchair-accessible. So, I use this! If I feel dizzy, I can just open the seat and sit down for a bit until by body chills the fuck out.

Electric Toothbrush

https://www.amazon.com/dp/B08LJNZW3Y/?coliid=I189MT1VEIKUTZ&colid=OPCCR26R0SR4&psc=1&ref_=list_c_wl_lv_ov_lig_dp_it

It doesn’t have to be this kind, but since I can’t stand long enough to brush my teeth very long (or at all some days), I use an electric toothbrush to get a better clean in a shorter amount of time. They cost a bit more, but less than a cavity filling.

Shower Chair

https://www.amazon.com/dp/B07NM77DJ2/?coliid=I1SRRBS7ISI3E1&colid=OPCCR26R0SR4&psc=1&ref_=list_c_wl_lv_ov_lig_dp_it

If you feel dizzy in the shower, or can’t stand very long due to pain, or for whatever reason, and are considering getting a shower chair, this is your sign to do it!! It has helped me so much and makes showering SO much easier and way less daunting.

Bath Pillow

https://www.amazon.com/dp/B0B9WG925R/?coliid=I1C4T2MUPR33WU&colid=OPCCR26R0SR4&psc=1&ref_=list_c_wl_lv_ov_lig_dp_it

I have chronic pain and laying in the bathtub in warm water can help with it, but it also hurt my neck to lay on the hard surface. Not anymore! I’ve also seen full-body bath pillows that would be GREAT but I don’t have anywhere to store it. For this one, I just keep it in the tub all the time.

That’s all I could think of at the moment, but I will reblog this with more items if I think of any! Feel free to add to this list yourselves!

[havegaysex]

I'm having a wheelchair fitting on Friday

Then it's 3 months wait till I get it if all goes well That means that by the time fall rolls around I'll be able to go leaf peeping with my friends on like those really long nature walks. And I can go to the botanic gardens in Denver and I could probably get a library pass for the Denver museum too. I haven't been to a lot of museum places in a really long time because before I got a mobility aid at all when I was trying to push through as a high schooler I almost passed out at the botanical gardens from the pain so I found a bench in the sun to lay down on and claimed I had a migraine because that was the only acceptable form of disability around my dad and now I can go as an adult with a friend or a partner and not have to worry about pain or low blood pressure.

[agendergenderqueermasculenbyguy]

I plan to make electrolyte popsicles (again)

Yay orthostatic dysregulation

[lupusbaby]

Some people don’t want to hear this but sometimes accessibility is not sustainable or eco-friendly. Disabled people sometimes need straws, or pre-made meals in plastic containers, or single-use items. Just because you can work with your foods in their least processed and packaged form doesn’t mean everyone else can.

[vtk13]

“slut era” i whisper to myself as i rot in my bed, sick like a frail victorian child

[chronicallydragons]

anyone else ever wish they could lie down harder? Like, I'm already horizontal, but I need more horizontal. I need to be absorbed by the floor. I think that would fix me

[certifiedgoofball]

i hate when i, a completely healthy person (very chronically ill), get sick (flare up) for no reason at all (i exerted myself way past my limit just cuz i didn’t wanna be “annoying”)

[mybodychoseviolence]

“surely this will not cause my chronic illness to flare up,” i say, actively doing something that has never failed to flare my chronic illness

[jenacat8-blog]

Being neurodivergent and chronically ill is crazy because you already have issues with executive functions and then your body hinders you even more. AND your sensory issues are heightened by the pain you feel.

[little-pissbaby]

fun fact about me! I have hyperadrenergic Postural Orthostatic Tachycardia Syndrome (hPOTS). this means I am prone to fainting when I change positions or when I feel a strong surge of emotion, positive or negative. for me, laughing is my worst non-postural trigger.

this is a clip from playing lethal company with friends a few months ago. you can hear the eerie silence of presyncope at 0:19, and the sound at 0:23 is my face hitting the keyboard lmao. I played this for my mother and she literally pissed herself laughing and DEMANDED I show every single person I know (including my doctors, who thought it was funny to see and surprisingly helpful, especially for being audio only).

[ididit-allofit-foryou]

does anyone else with POTS get really bloated? & if so, how do you relieve it?? i've literally been bloated for months & i've lost my hunger cues >.<

[teacupbug]

My controversial opinion is that I think chronically ill people should be able to fight one doctor a year

[potsiepumpkin]

Useful information

[i-the-spoonie]

[disabled-bug]

I’m so proud of people living with chronic health conditions. That shit is HARD. Idk who needs to hear this, but if no one else has said it: I’m proud of you. You���re sticking it out through so much pain and grief. That’s no small feat.

Every small thing you do for yourself health adds up. The grief is heavy and it comes from a place of love. The grief knows the pain is wronging you.

I’m proud of you. I hope on the good days you can be proud of yourself.

Keep going.

[spoonfulofhannah]

I wish all chronically ill and disabled people a very “doctors listening to you” November