gossamer4448 Posted January 7, 2019 Report Share Posted January 7, 2019 I know its not my fault I have this disorder ,but I feel a lot of guilt.I feel like I am a burden on my family. I know they love me but I just need a lot of help and emotional support. I feel bad because some people with pots are thriving,going to stores ,restaurants,jobs and I am 23 and house bound still living with my parents .I also have a lot of mental problems too (GAD,PTSD,depression) Quote Link to comment Share on other sites More sharing options...
Hutch Posted January 7, 2019 Report Share Posted January 7, 2019 I understand we’re your coming from. What are you doing to help yourself feel better? I do a lot of what you list. But I feel like h*** doing it. I wish all us pots suffers could move to a planet with really low gravity lol that way we could walk around and feel the same as when we’re laying down. I know your suffering and how you feel I’ve had it since a teen. Also had a alcoholic father that didn’t believe it said doctor was a Quack. Lol I remember a friend came over and I went outside sitting on the pouch laughing. about something he was telling me, I hadn’t been to school in weeks. It took all my strength to put on a fake smile and get out of bed for my friend not to see me weak. My dad came home from work. Said get in the house if you’re to sick for school you’re to sick for friends. Not only was I suffering from being sick I was also punished for being sick. My point is life can be pretty d*** unfair, and we can spend a lot of time hating it’s this way for us. But in the end it’s up to areself to do all we can, to feel better. All medications make me feel worse than better, but threw diet and pushing hard, I feel better then I did. I’m 27 been riding this up and down rolacoster since 13 teen had my worse I’ve ever been hit 8 mouths ago. But I thought I’ve been this bad before and got enough better that life was enjoyable. I’m going give it one last push, 8 mouths latter I’m still really for from well, but enough better that I can see change, i really think for you to feel any better you need to be sure your doing all you can for yourself remember the only way you will feel better is to do more. Small things like sweeping the floors to doing laundry small task can be steps to feel better will take mouths to start to see any small change. I hope my words help in some small way. Quote Link to comment Share on other sites More sharing options...
MeganMN Posted January 7, 2019 Report Share Posted January 7, 2019 Do not feel guilty. I do a ton of stuff. But I do it because I have to and feel like poop most of the time. As a result, I have even worse symptoms because I cannot take care of myself. Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 7, 2019 Report Share Posted January 7, 2019 @gossamer4448 - I was where you are now. I felt that I was useless b/c of my inability to do anything from POTS. I felt very much depressed and could not see an end to my symptoms. But it all worked out OK. I still have POTS, I still am disabled, I still cannot do many simple things … but I AM STILL HERE! And I love my life - limitations, challenges, other peoples opinions and all. You are still young, much progress to come. Hang in there : so you are 23 and living with your parents - I am 52 and dependent on my husband and daughter to help with the most simple things. And it was a lot worse, I am LUCKY to be able to do what I can do now. There is a lot more to be found out about POTS. And - have you seen an autonomic specialist? Someone who KNOWS what we endure and what can be done about it? If you have not - please DO ask for an appointment with one. Many docs do not know how to treat POTS ( they may diagnose you but do not have any idea how to treat it ). Be positive - you may feel like the only person on the planet that has your symptoms but on this forum we are all in the same boat. And we all survive day by day. POTS is scary and disheartening - but it is not a death sentence. BE WELL!!! Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted January 8, 2019 Report Share Posted January 8, 2019 Do not feel guilty, a lot of people have worked hard to get where they are and it took a lot to get there. We have all been where you are. It does get better. Even now I get feelings of guilt and I feel the need to apologize to my boys. But they always smile, give me a hug, and tell me it is OK. If you feel like the guilt is too much I would talk with a therapist. A lot of people who have chronic illnesses sometimes need some help to come to grips with it. Quote Link to comment Share on other sites More sharing options...
WinterSown Posted January 8, 2019 Report Share Posted January 8, 2019 14 hours ago, gossamer4448 said: I know its not my fault I have this disorder ,but I feel a lot of guilt.I feel like I am a burden on my family. I know they love me but I just need a lot of help and emotional support. I feel bad because some people with pots are thriving,going to stores ,restaurants,jobs and I am 23 and house bound still living with my parents .I also have a lot of mental problems too (GAD,PTSD,depression) Is someone laying a guilt trip down on you? Tell them to bug off! You had no control of the cause for dysautonomia if you even ever learn what that was. Management and medicine can help control or limit some of the symptoms but without the miracle of remission they are not going away. Anyone trying to make you feel responsible for this does not understand the syndrome and its many symptoms. Yeah, some people are thriving. But I just signed up with PeaPod to get my groceries delivered--I can't go to the supermarket because the sensory overload is a trigger for me, and I faint if I stand too long. Amazon takes care of the rest--no malls either, too loud, too busy, too bright. For occasions we choose quieter slower restaurants where the food is still good but the noise level is way less. I can't work outside the house anymore which triggered some depression, Lexapro is helping. Please be more kind to yourself. You are going through a tough time. Everyone here knows what you are feeling. Hugs. Quote Link to comment Share on other sites More sharing options...
gossamer4448 Posted January 8, 2019 Author Report Share Posted January 8, 2019 no i am feeling this myself but my mom does think im being dramatic about my symptoms. she helps cleans my room and she helps me bathe but when I overexert myself i get panic attacks and feel bad . i try to get up and walk around but if i Have to stand still i get sick and anxious somethings gonna happen. I dont like relying on others so much but i dont want to feel those feelings. She does not undertstand what i go through, she can do everything without a second thought.i have to mentally prepare myself to shower and leave the house . Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 8, 2019 Report Share Posted January 8, 2019 I am sorry @gossamer4448 - what you describe is typical for POTS and it is so hard to endure. It makes it so much worse when we feel like we have to justify our limitations to others who do not understand. I was in that boat once - and still know family members that do not get it. But it helped when I shared explanations with others, for example there is a video and a book on thedysautonomiaproject.org that addresses our illness in a way that is easy to understand and explains our symptoms. This has been extremely helpful for my family to grasp POTS and that our symptoms are real. Also - please know that HERE you are understood because we all share what you are going through. And again - please see an autonomic specialist for your symptoms, with proper treatment there can be great improvement! Quote Link to comment Share on other sites More sharing options...
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