Things you wish you could say

[crunchygranola]

I wish people understood how hard having POTS can be. My last year as a teenager have been stuck in a doctor’s office with needles in my arms and the constant “your bloodwork is fine, you’re making it up in your head” doesn’t help.
It has completely taken away every aspect of my social life. I used to have so much fun and go travel and go to events with my friends, but now, after people heard I got sick, they just leave. They get frustrated after a month because I’m not better, but they don’t bother to understand the term “chronic illness”. It’s zapped so much out of me— my bubbliness, my energy, my hope for the future… I’m so tired.
And it gets so lonely so quickly. I have a loving partner, but I want my friends, too. My parents are upset when I have flare ups, but they don’t understand that this is a real issue and that making me eat vegetables isn’t going to cure it.
I eat well and have a healthy lifestyle, but that’s not going to cure me of this. I’m doing what I can when I can, but it is so lonely.
It’s scary, too— especially when I’m alone. When I pass out, sometimes it’s for long periods of time. This morning, I completely lost mobility in my legs and had to use a wheelchair to get around the upstairs. Moreover, I hate when people say that POTS isn’t as bad as other illnesses. It’s not about what it is, but it’s about how it affects an individual.
I was only 17.

I just stopped getting invited to things, too. I had a good friend cancel on me because I asked if we could stay at my house and do something fun instead of go out— and she just canceled.
I asked another friend why he didn’t invite me to an event and he just said that i “would’ve said no anyways”.
It makes me not even want to have friends because it hurts so badly to be excluded from everything.

 

[crunchygranola]

Even though I’m not able to be with the people I love sometimes. I hope I can make a difference wherever I go despite my physical circumstances.
I want to spread joy— whether it’s shooting them a text, or uplifting people on here, I just want to help people and let them know that they’re supported.
As hard as it is and as much as my energy doesn’t want me to, I will fight to give every percentage I have. If I have 10% one day, and I give all that 10%, I know I gave 100%.
My partners mom said I would be a burden to him when we got married, and it STUNG because she and I are very close, but I know that I’m doing what I can to get better— even if it’s not 100%. I’m doing what I can. That’s all that matters.
Life is still possible for me despite my circumstances, and it may look different compared to some, but life is still possible.
Besides, my partner loves me very much and loves me despite this and is willing to make it work. I really appreciate how understanding he is with it and he reassures me often that I am
not a burden to him in the slightest. Life is still possible, and I can’t wait to spend it with him.

 

[crunchygranola]

I am really proud of myself today.
I had a really bad flare up and was exhausted beyond all measure, and I was nearly immobile.
Regardless, I used a mobility aid got myself into the bathroom. I took a cold shower with breaks, washed my hair, brushed my teeth, and did a little bit of makeup to pretty myself up to feel better— just some mascara and concealer.
I made myself breakfast— just an english muffin with butter, and went to check on my chickens and fill their water.
I came back inside and drank lots of water and read Twilight before taking a nap for a couple hours.
I’m proud of myself for getting out of bed today.
Well done, old bones.

 

[ChicNmom]

I'm sorry to hear you're going through this. I've had an auto immune issue since I was 25. But people didn't understand because to everyone else I look very healthy.

Are there any online support groups you can find? You may find others who have tried different treatments that have helped. I feel like you really need to be your own advocate with healthcare. I have a client who had an unusual health problem and went to every specialist in Boston. No one knew what was wrong. Almost a year later she found the answer online, took the info to her Dr. They are now trying the treatments she found online and seeing improvement.

Could you plan to invite people over for movie nights etc so it's not a last minute change of plans?

 

[crunchygranola]

I'm sorry to hear you're going through this. I've had an auto immune issue since I was 25. But people didn't understand because to everyone else I look very healthy.

Are there any online support groups you can find? You may find others who have tried different treatments that have helped. I feel like you really need to be your own advocate with healthcare. I have a client who had an unusual health problem and went to every specialist in Boston. No one knew what was wrong. Almost a year later she found the answer online, took the info to her Dr. They are now trying the treatments she found online and seeing improvement.

Could you plan to invite people over for movie nights etc so it's not a last minute change of plans?

Exactly. Having an invisible illness is misleading to a lot of people.
I’m trying to find online support groups, but I’m scared that i’ll wind up in one that’s toxic— that’s been my experience with some past support groups.
I like the movie night idea!!
I’ve tried reaching out to some and they said they hadn’t wanted to, but that doesn’t mean I can’t contact some others.
I have a friend that also has a chronic illness, so maybe she and I can get together, too.

 

[crunchygranola]

I am still worthy and deserving of life and love.

 

[RoyalChick]

My town didn’t just issue a tornado warning.

 

[tripletfeb]

Exactly. Having an invisible illness is misleading to a lot of people.
I’m trying to find online support groups, but I’m scared that i’ll wind up in one that’s toxic— that’s been my experience with some past support groups.
I like the movie night idea!!
I’ve tried reaching out to some and they said they hadn’t wanted to, but that doesn’t mean I can’t contact some others.
I have a friend that also has a chronic illness, so maybe she and I can get together, too.

It's summer time. Make it an outside movie night, if you can. If you have a projector, or know someone who does, put up a large white sheet outside and project the movie onto that. Pop some popcorn, make smores, and enjoy the night

My town didn’t just issue a tornado warning.

Stay safe!

 

[notabitail]

https://www.backyardchickens.com/threads/dominique-hen-might-be-sick.1636514/

 

[tripletfeb]

I wish people understood how hard having POTS can be. My last year as a teenager have been stuck in a doctor’s office with needles in my arms and the constant “your bloodwork is fine, you’re making it up in your head” doesn’t help.
It has completely taken away every aspect of my social life. I used to have so much fun and go travel and go to events with my friends, but now, after people heard I got sick, they just leave. They get frustrated after a month because I’m not better, but they don’t bother to understand the term “chronic illness”. It’s zapped so much out of me— my bubbliness, my energy, my hope for the future… I’m so tired.
And it gets so lonely so quickly. I have a loving partner, but I want my friends, too. My parents are upset when I have flare ups, but they don’t understand that this is a real issue and that making me eat vegetables isn’t going to cure it.
I eat well and have a healthy lifestyle, but that’s not going to cure me of this. I’m doing what I can when I can, but it is so lonely.
It’s scary, too— especially when I’m alone. When I pass out, sometimes it’s for long periods of time. This morning, I completely lost mobility in my legs and had to use a wheelchair to get around the upstairs. Moreover, I hate when people say that POTS isn’t as bad as other illnesses. It’s not about what it is, but it’s about how it affects an individual.
I was only 17.

@crunchygranola I saw this article and thought of you right away.

What is POTS, the disease affecting Olympic swimmer Katie Ledecky?

https://www.foxnews.com/health/what-pots-disease-affecting-olympic-swimmer-katie-ledecky