You said every word that I have ever wanted to say. Thank you so much for saying them. Find me on FB please b/c sometimes I swear I feel like the only one on the planet with this disease (yet I know it spreading like wild fire). Carrie Freedom Gimbel Dillon.
I've been having a crappy 6 months b/c I've been so week since last spring, just hoping that I'd pop out and just get better. I'm 35 watching my life go by, watching my friends go out...and no one gets it...no one...ur video is the only one that seems to get it...I just wanna get a blanket and sleep over...LOL
I had a 'bad day', so I know exactly what you mean. I hope that I can encourage you by saying two things: 1) Things will improve. I know I have and Mayo decided not to give me any medication. 2) I am in college right now (struggling some days to keep my head up, but willpower can propel you far) studying to go into medicine. Hopefully, I'll make it to medschool, so there is someone who gets being sick in the medical profession. I wish you well on your journey towards recovery.
I know you posted this video awhile back but it really helped me tonight. It is Friday night and I am home alone while all of my friends are out, so watching your video really really helped me not feel so alone. Btw, I completely understand how you were feeling because I have lyme dis-ease and I have alot of days that I do not have the energy or will power to do anything. You are not alone either. I hope you are feeling better today! So, thanks for posting this video!!!
I have fibromyalgia and pots too. I went through many years being told i was making it up/ a hypochondriac, "it was in my head". My Doctors couldn't figure it out, but eventually I found a great doctor. I have been sick for four years and recently found out I had pots. It's really hard sometimes and I do feel the same way that you do. But we all will make it through this. Good luck.
Hi, I'm a guy with pots, I've had it for about ten years I guess bit I didn't know what it was and it slowly got worse. We will beat it! Don't worry :) I wish there was a way for everyone with pots to stay in touch with each other so we tell everyone when we find things that help. Is there a group that you know of? Or maybe we can start a Facebook page or something.
I can't tell you how much this helped me today. I know this was done a while ago, but I wanted to let you know that you helped me not feel so alone today. I'm having one of those "stay in bed and cry it all out" days. *sigh*
Ugh. It sucks to be sick so young. I was diagnosed with CFS at 13, and over the last 16 years have had to accept that it isn't going anywhere, except maybe on vacation for a year or two if I'm lucky. But, the severity does vary over time and most of the time, you won't be at your worst. My best advice for the future is to work full time whenever you are able and try to find a company that provides good disability insurance. Once you have a job where you're covered, finances aren't as scary.
I think your heaps cute :) soldier on, i have pots too, im a dude and it sucks.. Really humid days and strange pressure days mess with me allot and i feel really sick! Im doing a tilt table test soon, so hopefully we can get some diagnosis.
Wish i could talk to you guys in person or online, let me know if you have any contacts : )
You are brave and inspiring, thank you for posting this video. You have expressed so many feelings I am unable to express. You are helping others by making these videos. I am certainly having one of those days.
thanks for opening up and showing the true you for that day. Im having one of them today. I hate not being able to go out with my friends or travel and I too had to drop out of school. big boo. I can see you are a smile positive wonderful person to be around and what you (we) are going through is remarkable. you have the right to have a sad day. I try 5 min a day to let it out. also, I have two kids they are 5 and 6 and altho its hard, its do able. I have an aid that helps, so could you
wow, I really hope you don't take this video down...it is real & transparent...just what people need. Thank you for sharing in a vulnerable moment of your life. You are helping others just by being honest about your feelings. You are very beautiful inside & out & I do pray you will be totally free & healed from this disease in the near future!
WOw....6 years . I'm so sorry. The bad thing is i don't have any of these symptions or pots at all like some of the other people commented about but even i feel for you. Don't think you always have to have the exact probblem to know what somone is going threw. Kind of stumbled on this when i was looking at something else.
Just don't worry , you'll be strong and free one day. Somtimes we wonder why things happen to us...prehaps so we don't take things for granit and realize whats important.
I just wanted to say, even though you've wanted to delete this video, I'm glad you didn't. Everything you said, I've thought it all before. Although it is unfortunate that we share this illness, having watched this video and seen what it is like for someone else who has it, has made me feel less alone. I'm so sorry you've had to live with this for 6 years. I hope it gets better for you, even if it doesn't get better for me. xx
Words outta my mouth. It's Fri. We were born like this. The more I think back thru childhood.. big event dropped out of swim team @ 15, put out back same yr, stomach bled @ 18 n sun allergy, wrist kept me off computer n out of work @ 20ish, walked out of school @ 21, homeless 22... vomiting, stress fractures 24ish. Housing, SSDI, Medicare @ 25(2005). Dx of POTS? few mos ago... 30 now. Been a long strange trip, not knowing what's going on, finally connecting the dots...
I cannot thank you enough for making this video. I just made a video last night talking to my friend, crying into the camera about being alone on a Friday night. I want you to know you are not alone..and thank you for helping me feel like I'm not so alone in this moment either. I will continue to follow you and the other POTS girls, you are all inspiring <3
@lauranne2585 so glad this helped you. personally i find this video depressing and have been wanting to delete it haha! but i'm so glad it's been able to help even a couple people on bad days :)
I watch this video when I feel "POTSy" and it helps me to know that I am not alone in my frustrations. Thank you for showing your true emotions and sharing.
I feel the same way. I know you posted this a while ago, but I wanted to tell you that I appreciate you making this video. I have had every single thought that you just shared. I have been struggling with many of the same issues latley. I want to be a nurse, but I don't know if that is a realistic dream for me or not. Thank you for your very courageous testimony.
hey i just got diagnosed with POTS and I am going to school to be a nurse. dont let this illness ruin ur dreams. there are many things u can do to slow ur symptoms down. i know i have to increase my fliuds, salt and potassium. I have had a hard time standing for long periods of time for almost 10 years now but just got diagnosed. i still went out and lived my life though. : ) even medications can help a lot, so dont let anything keep u from ur dreams, fight for urself.
I dont think you should take this video down! It shows how we feel sometimes, and I know how it feels to feel alone, and sometimes we need to just cry. I think this video is true and real and I dont like the fact you feel this way, but I like the fact you arent afraid to let people know ITS HARD to deal with POTS
You are definitely a positive person, but no one can be positive all the time. *hugs* It gets to us all. And it is definitely cathartic to get it out. I understand so much of what you're saying. It feels like you've become someone else, but the longer it goes on, the more you feel like you've lost who you are, and that can feel so sad and so scary sometimes! I so wish we all lived close by so we could hang out together. I love you! We'll all keep digging deep together. *morehugs!* xx
Hi Shannon, I have to tell you my son is right here right now. He just said mom no girl will want to deal with this. He has missed 90% of his freshman year. He feels discouraged and alone, like you. Please remember that every video you make helps another struggling and somehow we have to get everyone connected! I love you for fighting girl, and you are a treasure!
Hi dear radlikemad, I know we are on one of life's Roller Coasters...up and down, twisting around....and the road can be a long, tiring road. Please know that everything works together for good (Rom 8:28)....and one day, your life will change some one else's life, and so on, and so on.....so you see? You live with us forever. We love you forever. LoLv, Margaret
You're NEVER alone Shannon, I understand how you feel and I know a lot of the guys and girls do. We'll make people understand with time! You have US. I respect you and don't like seeing you cry... it makes me tear up... and I'm the "Tuesday Night Delight".
i can't even describe how much this resonates with me, could literally be me talking. i just turned 20, had to leave school twice, been sick for 4 years. but i can tell you for certain you are going to recover. i'm sure you know this deep down but as you say we need those days of fragility, otherwise we wouldnt be human. it's almost impossible for people to truely comprehend what living this life is like, it's so frustrating, i know. but you are so strong! keep believing, health will materialize
Shannon, thank you for being so vulnerable & sharing this video. So brave. I have felt every exact thing you said in this video. & Im sure many others have. You are not useless, you are helping so many people. And there IS HOPE for us. We WILL get better. You have a future. And you are already successful, you have already made something beautiful out of your life, even with POTS. I am thinking of you & saying extra prayers for you this week. So much love & hugs to you, gorgeous girl. <3Hillary
You are giving people so much hope and comfort through these videos. And you are a beautiful person, inside & out - exactly what this world needs more of. Never, ever forget that. Love you!
Shan, this video was so honest and touching. You were so brave to post it. You put into words exactly how I feel some days. Wish I could hug you right now! Or that we could just lay around together and have a sob fest. lol. You are not alone at all, and you know I'm here if you need to talk. (hugs) Everythings going to be okay. This too shall pass. Seems like we're all having a rough couple of months but I know it won't last. & please never think that you don't have a purpose. You definitely do
Shan... *hugs from the other part of the ocean* This video made me cry a lot..please hang in there. I just want to give you an hug from here, and I feel so useless right now.
I can only say that you're in my thoughts and I hope you're feeling better today. I know that's hard, and I know I'm totally useless, but you don't have to feel dump. Please, when you want to let this out...think about me too! At last I can listen.. Take care Shan.
its so hard when we're all so energetic to be forced to just lay around and rest. im 28, and most ppl my age are married, own a home, career, kids... and I'm stalled and left waiting to see if that will even be possible for me. you have every right to be upset *big hugs* you'd be crazy if you werent. even the ppl who have our backs, cant fully understand what its like to not be able to "live"
Yes there are those of us who really do live it also and totally understand. Hugssss.hang in there & never give up! we are here to help each other thru.
@ducbert I haven't actually been diagnosed with CFS, but from what i have heard from others and my own research i feel like they are extremely similar, and often the same illness. its the dizzyness, weakness and nausea that keeps me from being up and walking around most of the time.. thanks for the suggestion though!
Hang in there, beautiful. There are lots of people who know EXACTLY what you are going through. You are not alone, and I'm sure your viewers appreciate the fact that you are making them feel like they are not alone. What can I say? I hope you feel better soon. I'm thinking of you. Take care, Shan. xoxo
This video you just made me cry, and I just want to give you a hug so bad :(
You really do inspire me Shannon. Just always remember that there are a lot of people who love you. And as you said; there are a lot of people who have it a lot worse. For example, people with autonomic failure. I just don't know how they deal with it. We have an important thing to keep us going. Hope.
As you said, it is so easy to feel alone and misunderstood with this condition and the things we have to think about that none of our friends can even comprehend...creating this video will help me and other chronically ill people realize that we aren't alone, and there are others that know EXACTLY what we're going through. Thank you.
@ChanShelly thanks so much Shelly! you are an amazing, amazing young woman, and it is because of people like you that i am so so grateful to have youtube to come to when i'm feeling down, or just want to connect with others who understand. you also are not alone, and you know you can message me anytime :) xxo
DO NOT feel bad about being "negative" in this video, it is one of my favorite videos I have ever seen, and in a way it made me feel better because I know I'm not alone in this situation. I really appreciate how open and honest you were in making this.
?" It's so painful and scary to think about. I often avoid thinking about my future at all because it just hurts so bad when I let the worries go through my head. It's the same with the past - it's sad seeing who you used to be, and it's scary seeing how much you've changed, and how life is just flashing before your eyes and you feel like you're missing out on it.
The future...it's such a scary thing to think about. I'm 19 as well, a freshman in college currently and I felt like you were reciting my life story here! The unknown is so frustrating...you want to get better so bad but if you're honest, you don't know if you ever will. And that's so scary. I have the same issues about, "will I ever even be able to use this degree?" And, "will I ever be able to have kids and take care of them?"
I really hope you don't get rid of this video. It really resonated with me and I found myself crying with you as I watched. Thank you for being brave and honest enough to put this up!!! You touched on so many very sensitive subjects for me - these are the things that keep me up late at night worrying, that have me crying alone in bed, and that I have never been able to say out loud because it's just so painful.
Hugs.....I know exactly how you feel. I get down sometimes about all I have lost , and about my future to. Never give up! We can't ever give up! I will add you to my prayers. You have the right to have bad days and to feel down. You are absolutely right. People who tell u things are so ignorant......they have no clue our reality! Sometimes I get so mad!I have been sick for 10 yrs and I will never get used to it. Feel free to add me as a friend.
You said every word that I have ever wanted to say. Thank you so much for saying them. Find me on FB please b/c sometimes I swear I feel like the only one on the planet with this disease (yet I know it spreading like wild fire). Carrie Freedom Gimbel Dillon.
BigCarrieD 1 week ago
I've been having a crappy 6 months b/c I've been so week since last spring, just hoping that I'd pop out and just get better. I'm 35 watching my life go by, watching my friends go out...and no one gets it...no one...ur video is the only one that seems to get it...I just wanna get a blanket and sleep over...LOL
BigCarrieD 1 week ago
I had a 'bad day', so I know exactly what you mean. I hope that I can encourage you by saying two things: 1) Things will improve. I know I have and Mayo decided not to give me any medication. 2) I am in college right now (struggling some days to keep my head up, but willpower can propel you far) studying to go into medicine. Hopefully, I'll make it to medschool, so there is someone who gets being sick in the medical profession. I wish you well on your journey towards recovery.
drpwiddy 1 month ago
Fuck?
lgvmd 2 months ago
Wanna fyck?
lgvmd 2 months ago
I know you posted this video awhile back but it really helped me tonight. It is Friday night and I am home alone while all of my friends are out, so watching your video really really helped me not feel so alone. Btw, I completely understand how you were feeling because I have lyme dis-ease and I have alot of days that I do not have the energy or will power to do anything. You are not alone either. I hope you are feeling better today! So, thanks for posting this video!!!
Betterton2007 3 months ago
Comment removed
couragegirl1 3 months ago
You are in my prayer, dear angel.
rapreborn 5 months ago
I have fibromyalgia and pots too. I went through many years being told i was making it up/ a hypochondriac, "it was in my head". My Doctors couldn't figure it out, but eventually I found a great doctor. I have been sick for four years and recently found out I had pots. It's really hard sometimes and I do feel the same way that you do. But we all will make it through this. Good luck.
whitcarm27 6 months ago
Hi, I'm a guy with pots, I've had it for about ten years I guess bit I didn't know what it was and it slowly got worse. We will beat it! Don't worry :) I wish there was a way for everyone with pots to stay in touch with each other so we tell everyone when we find things that help. Is there a group that you know of? Or maybe we can start a Facebook page or something.
11208011 6 months ago
I can't tell you how much this helped me today. I know this was done a while ago, but I wanted to let you know that you helped me not feel so alone today. I'm having one of those "stay in bed and cry it all out" days. *sigh*
sherriblueberri 8 months ago
@sherriblueberri i'm so sorry you were having a bad day. know that you're never alone! so glad this video helped <3
radlikemad 6 months ago
Ugh. It sucks to be sick so young. I was diagnosed with CFS at 13, and over the last 16 years have had to accept that it isn't going anywhere, except maybe on vacation for a year or two if I'm lucky. But, the severity does vary over time and most of the time, you won't be at your worst. My best advice for the future is to work full time whenever you are able and try to find a company that provides good disability insurance. Once you have a job where you're covered, finances aren't as scary.
nonebutourselves 9 months ago
I think your heaps cute :) soldier on, i have pots too, im a dude and it sucks.. Really humid days and strange pressure days mess with me allot and i feel really sick! Im doing a tilt table test soon, so hopefully we can get some diagnosis.
Wish i could talk to you guys in person or online, let me know if you have any contacts : )
god bless
ChrisVitchev 10 months ago
You are brave and inspiring, thank you for posting this video. You have expressed so many feelings I am unable to express. You are helping others by making these videos. I am certainly having one of those days.
tracyannceecee 10 months ago
thanks for opening up and showing the true you for that day. Im having one of them today. I hate not being able to go out with my friends or travel and I too had to drop out of school. big boo. I can see you are a smile positive wonderful person to be around and what you (we) are going through is remarkable. you have the right to have a sad day. I try 5 min a day to let it out. also, I have two kids they are 5 and 6 and altho its hard, its do able. I have an aid that helps, so could you
sunkissedbecca 1 year ago
wow, I really hope you don't take this video down...it is real & transparent...just what people need. Thank you for sharing in a vulnerable moment of your life. You are helping others just by being honest about your feelings. You are very beautiful inside & out & I do pray you will be totally free & healed from this disease in the near future!
nonantum777 1 year ago
WOw....6 years . I'm so sorry. The bad thing is i don't have any of these symptions or pots at all like some of the other people commented about but even i feel for you. Don't think you always have to have the exact probblem to know what somone is going threw. Kind of stumbled on this when i was looking at something else.
Just don't worry , you'll be strong and free one day. Somtimes we wonder why things happen to us...prehaps so we don't take things for granit and realize whats important.
thegauntlet2001 1 year ago
I just wanted to say, even though you've wanted to delete this video, I'm glad you didn't. Everything you said, I've thought it all before. Although it is unfortunate that we share this illness, having watched this video and seen what it is like for someone else who has it, has made me feel less alone. I'm so sorry you've had to live with this for 6 years. I hope it gets better for you, even if it doesn't get better for me. xx
-Ariel
a0ski 1 year ago
@a0ski thanks so much, i hope it gets better for all of us :)
radlikemad 1 year ago
Words outta my mouth. It's Fri. We were born like this. The more I think back thru childhood.. big event dropped out of swim team @ 15, put out back same yr, stomach bled @ 18 n sun allergy, wrist kept me off computer n out of work @ 20ish, walked out of school @ 21, homeless 22... vomiting, stress fractures 24ish. Housing, SSDI, Medicare @ 25(2005). Dx of POTS? few mos ago... 30 now. Been a long strange trip, not knowing what's going on, finally connecting the dots...
Future? carpe diem
drgn420 1 year ago
You'll be fine! dont worry, be happy!
lwjo93 1 year ago
Comment removed
lwjo93 1 year ago
I cannot thank you enough for making this video. I just made a video last night talking to my friend, crying into the camera about being alone on a Friday night. I want you to know you are not alone..and thank you for helping me feel like I'm not so alone in this moment either. I will continue to follow you and the other POTS girls, you are all inspiring <3
lauranne2585 1 year ago
@lauranne2585 so glad this helped you. personally i find this video depressing and have been wanting to delete it haha! but i'm so glad it's been able to help even a couple people on bad days :)
radlikemad 1 year ago
I watch this video when I feel "POTSy" and it helps me to know that I am not alone in my frustrations. Thank you for showing your true emotions and sharing.
MrsMemster 1 year ago
@MrsMemster thank you so much!
radlikemad 1 year ago
@MrsMemster thank means so much to me. thank you <3
radlikemad 1 year ago
I feel the same way. I know you posted this a while ago, but I wanted to tell you that I appreciate you making this video. I have had every single thought that you just shared. I have been struggling with many of the same issues latley. I want to be a nurse, but I don't know if that is a realistic dream for me or not. Thank you for your very courageous testimony.
potsiemommy 1 year ago
@potsiemommy so glad you liked it :) hope you are feeling well xxo
radlikemad 1 year ago
@potsiemommy
hey i just got diagnosed with POTS and I am going to school to be a nurse. dont let this illness ruin ur dreams. there are many things u can do to slow ur symptoms down. i know i have to increase my fliuds, salt and potassium. I have had a hard time standing for long periods of time for almost 10 years now but just got diagnosed. i still went out and lived my life though. : ) even medications can help a lot, so dont let anything keep u from ur dreams, fight for urself.
alesciamc3 8 months ago
I dont think you should take this video down! It shows how we feel sometimes, and I know how it feels to feel alone, and sometimes we need to just cry. I think this video is true and real and I dont like the fact you feel this way, but I like the fact you arent afraid to let people know ITS HARD to deal with POTS
belladiver612 1 year ago
@belladiver612 thank you :)
radlikemad 1 year ago
You are definitely a positive person, but no one can be positive all the time. *hugs* It gets to us all. And it is definitely cathartic to get it out. I understand so much of what you're saying. It feels like you've become someone else, but the longer it goes on, the more you feel like you've lost who you are, and that can feel so sad and so scary sometimes! I so wish we all lived close by so we could hang out together. I love you! We'll all keep digging deep together. *morehugs!* xx
dancingsunbeams 1 year ago
Hi Shannon, I have to tell you my son is right here right now. He just said mom no girl will want to deal with this. He has missed 90% of his freshman year. He feels discouraged and alone, like you. Please remember that every video you make helps another struggling and somehow we have to get everyone connected! I love you for fighting girl, and you are a treasure!
xcepshnlgirl 1 year ago
Hi dear radlikemad, I know we are on one of life's Roller Coasters...up and down, twisting around....and the road can be a long, tiring road. Please know that everything works together for good (Rom 8:28)....and one day, your life will change some one else's life, and so on, and so on.....so you see? You live with us forever. We love you forever. LoLv, Margaret
DysautonomiaMD 1 year ago
You're NEVER alone Shannon, I understand how you feel and I know a lot of the guys and girls do. We'll make people understand with time! You have US. I respect you and don't like seeing you cry... it makes me tear up... and I'm the "Tuesday Night Delight".
bionyx86 1 year ago
i can't even describe how much this resonates with me, could literally be me talking. i just turned 20, had to leave school twice, been sick for 4 years. but i can tell you for certain you are going to recover. i'm sure you know this deep down but as you say we need those days of fragility, otherwise we wouldnt be human. it's almost impossible for people to truely comprehend what living this life is like, it's so frustrating, i know. but you are so strong! keep believing, health will materialize
monogirl3 1 year ago
@monogirl3 thank you,i it will, for both of us. stay strong and keep fighting! hugs xxo
radlikemad 1 year ago
Shannon, thank you for being so vulnerable & sharing this video. So brave. I have felt every exact thing you said in this video. & Im sure many others have. You are not useless, you are helping so many people. And there IS HOPE for us. We WILL get better. You have a future. And you are already successful, you have already made something beautiful out of your life, even with POTS. I am thinking of you & saying extra prayers for you this week. So much love & hugs to you, gorgeous girl. <3Hillary
hopefulhillary 1 year ago
@hopefulhillary I'm so glad you were able to relate, and thank you so much for your kind words Hillary! Hugs! xxo
radlikemad 1 year ago
You are giving people so much hope and comfort through these videos. And you are a beautiful person, inside & out - exactly what this world needs more of. Never, ever forget that. Love you!
chronicallykyli 1 year ago
@chronicallykyli thank you so much girl! so nice to know that we are all in this together. love you lots! xxo
radlikemad 1 year ago
Shan, this video was so honest and touching. You were so brave to post it. You put into words exactly how I feel some days. Wish I could hug you right now! Or that we could just lay around together and have a sob fest. lol. You are not alone at all, and you know I'm here if you need to talk. (hugs) Everythings going to be okay. This too shall pass. Seems like we're all having a rough couple of months but I know it won't last. & please never think that you don't have a purpose. You definitely do
chronicallykyli 1 year ago
Ok, I came again here, just to say once more that you need to stay strong as you always do.
Shan, I'd really like to give you an hug. Please tell me that you're feeling better now :(
silentheaven 1 year ago
Shan... *hugs from the other part of the ocean* This video made me cry a lot..please hang in there. I just want to give you an hug from here, and I feel so useless right now.
I can only say that you're in my thoughts and I hope you're feeling better today. I know that's hard, and I know I'm totally useless, but you don't have to feel dump. Please, when you want to let this out...think about me too! At last I can listen.. Take care Shan.
silentheaven 1 year ago
@silentheaven thank you vincenzo, i hope all is well with you, thinking and praying for you xxo
radlikemad 1 year ago
its so hard when we're all so energetic to be forced to just lay around and rest. im 28, and most ppl my age are married, own a home, career, kids... and I'm stalled and left waiting to see if that will even be possible for me. you have every right to be upset *big hugs* you'd be crazy if you werent. even the ppl who have our backs, cant fully understand what its like to not be able to "live"
ashpauls 1 year ago
Yes there are those of us who really do live it also and totally understand. Hugssss.hang in there & never give up! we are here to help each other thru.
ironbith 1 year ago
@ironbith thanks so much! hugs!
radlikemad 1 year ago
oh hey shan
fIagg 1 year ago
@ducbert I haven't actually been diagnosed with CFS, but from what i have heard from others and my own research i feel like they are extremely similar, and often the same illness. its the dizzyness, weakness and nausea that keeps me from being up and walking around most of the time.. thanks for the suggestion though!
radlikemad 1 year ago
Hang in there, beautiful. There are lots of people who know EXACTLY what you are going through. You are not alone, and I'm sure your viewers appreciate the fact that you are making them feel like they are not alone. What can I say? I hope you feel better soon. I'm thinking of you. Take care, Shan. xoxo
-Sarah
wafflesmakemylife 1 year ago
@wafflesmakemylife thanks so much Sarah :) xxo
radlikemad 1 year ago
This video you just made me cry, and I just want to give you a hug so bad :(
You really do inspire me Shannon. Just always remember that there are a lot of people who love you. And as you said; there are a lot of people who have it a lot worse. For example, people with autonomic failure. I just don't know how they deal with it. We have an important thing to keep us going. Hope.
coolgirlee 1 year ago
@coolgirlee don't cry! lol. i'm feeling better today :) thanks so much Emaa! and i hope you're feeling better too :) xxo
radlikemad 1 year ago
As you said, it is so easy to feel alone and misunderstood with this condition and the things we have to think about that none of our friends can even comprehend...creating this video will help me and other chronically ill people realize that we aren't alone, and there are others that know EXACTLY what we're going through. Thank you.
ChanShelly 1 year ago
@ChanShelly thanks so much Shelly! you are an amazing, amazing young woman, and it is because of people like you that i am so so grateful to have youtube to come to when i'm feeling down, or just want to connect with others who understand. you also are not alone, and you know you can message me anytime :) xxo
radlikemad 1 year ago
DO NOT feel bad about being "negative" in this video, it is one of my favorite videos I have ever seen, and in a way it made me feel better because I know I'm not alone in this situation. I really appreciate how open and honest you were in making this.
ChanShelly 1 year ago
?" It's so painful and scary to think about. I often avoid thinking about my future at all because it just hurts so bad when I let the worries go through my head. It's the same with the past - it's sad seeing who you used to be, and it's scary seeing how much you've changed, and how life is just flashing before your eyes and you feel like you're missing out on it.
ChanShelly 1 year ago
The future...it's such a scary thing to think about. I'm 19 as well, a freshman in college currently and I felt like you were reciting my life story here! The unknown is so frustrating...you want to get better so bad but if you're honest, you don't know if you ever will. And that's so scary. I have the same issues about, "will I ever even be able to use this degree?" And, "will I ever be able to have kids and take care of them?"
ChanShelly 1 year ago
Shannon -
I really hope you don't get rid of this video. It really resonated with me and I found myself crying with you as I watched. Thank you for being brave and honest enough to put this up!!! You touched on so many very sensitive subjects for me - these are the things that keep me up late at night worrying, that have me crying alone in bed, and that I have never been able to say out loud because it's just so painful.
ChanShelly 1 year ago
Hugs.....I know exactly how you feel. I get down sometimes about all I have lost , and about my future to. Never give up! We can't ever give up! I will add you to my prayers. You have the right to have bad days and to feel down. You are absolutely right. People who tell u things are so ignorant......they have no clue our reality! Sometimes I get so mad!I have been sick for 10 yrs and I will never get used to it. Feel free to add me as a friend.
ironbith 1 year ago
@ironbith thanks for understanding :) i'm sorry you have to, but just knowing others are out there feelings the same way makes me feel better!!
radlikemad 1 year ago